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Alzheimer’s disease and related dementias research communication practices with minoritized racial and ethnic groups: a multiple case study
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Content
Alzheimer’s Disease and Related Dementias Research Communication Practices with
Minoritized Racial and Ethnic Groups: A Multiple Case Study
by
Beatrice Martínez
A Dissertation Presented to the
FACULTY OF THE USC GRADUATE SCHOOL
UNIVERSITY OF SOUTHERN CALIFORNIA
In Partial Fulfillment of the
Requirements for the Degree
DOCTOR OF PHILOSOPHY
(SOCIAL WORK)
August 2023
Copyright 2023 Beatrice Martínez
ii
Dedication
This work was inspired by my experience as a community activist, a social worker, and a
researcher. This dissertation is dedicated to my husband and greatest supporter, Daniel; to my
Mamí and Dad, my Mama Liz and Papa, to my bisabuelita, mis abuelos, y mis antepasados; to all
of my brothers and sisters, my besties and incredible group of friends, and Wookito. Thank you
all for your support. It was greatly needed and appreciated. My deepest gratitude and praise to
The One that has always gone before me and who has never forsaken me.
My work is dedicated to all the Black, Indigenous, Latinx and immigrant people I work alongside
with. May this and my future work, inform the delivery of social services, the pursuit of social
justice , and health equity for all.
iii
Acknowledgements
My sincere appreciation and gratitude to everyone that has been an integral part of this
journey. Thank you to my advisor, Dr. Maria Aranda, whose expertise, knowledge, and guidance
was necessary for me to be able to complete one of the most difficult challenges of my life. To
Dr. Concepcion Barrio, thank you for your suggestions and words of wisdom. Dr. Albert Farias,
thank you for reminding me of my love for research during such a turbulent time in my journey.
Dr. Perez-Jolles, thank you for your patience, instructi on, and kindness, it truly made a
difference, and I will be forever grateful. Thank you to so many at the USC Suzanne Dworak -Peck
School of Social Work. Dr. Wu, Dr. Mor Barak, Dr. Lee, Dr. Cepeda, Dr. Hurlburt, and Ms.
Sampson for your support, guidance, encouragement, and for the opportunities to learn and
grow outside of the classroom. To the Latina PhDs@USC and the Latina PhDs that have done
this before me, I could not have done this without you. A very special and heartfelt thank you to
my big sisters: Dr. Angel Jones, Dr. Lizbeth Gaona, Dr. Priscilla Vasquez, Dr. Imelda Padilla-
Frausto, Dr. Cynthia Villarreal, Dr. Johanna Avelar, Dr. Theresa Hernandez, Dr. Karina Santellano,
Dr. Blanca Ramirez, Dr. Cynthia Ramirez, and Dr. Erika Meza. Each of you inspires me in more
ways than you know. The work you do is truly brilliant and needed in this world. Gracias. In
addition, thank you for your support, Dr. Jiaming Liang, Dr. Sarah Soakai, Dr. Iris Aguilar, Dr.
Angela Gutiérrez, Dr. Nasim Ferdows, Dr. Yaqin Lin, and Dr. Shameika Daye. Thank you all for
being the role models I needed when I needed it the most. Thank you to those that have never
doubted my perseverance and recognized my potential before I acknowledged it. Mr. Solis, Mr.
Cha, Dr. Afari, and Dr. Mehta, thank you.
iv
Table of Contents
Dedication……………………………………………………………………………………………………………………………… …ii
Acknowledgements…………………………………………………………………………………………………………………..iii
List of Tables…………………………………………………………………………………………………………………..………..vi
List of Figures……………………………………………………………………………………………………………………………vii
Abstract………………………………………………………………………………………………………………………………….viii
Chapter One: Introduction …………………………………………………………………………………………………………1
Context and Background………………………………………………………………………………………………..1
Significance …………………………………………………………………………………………………………………….2
Study Aims……………………………………………………………………………………………………………..………4
Chapter Two: Literature Review…………………………………………………………………………………………………6
Trust……………………………………………………………………………………………………………………………..9
Alzheimer’s Disease Research Centers……………..…………………………………………………………..12
Conceptual Framework…………………………………………………………………………………………………13
Preliminary Data………………………………………………………………………………………………………..…15
Social Work Implications ………………………………………………………………………………………………17
Chapter Three: Methods………………………………………………………………………………………………………….19
Sampling……………….……………………………………………………………………………………………………..20
Multiple Case Study ……………………………………………………………………………………………………..21
Data Collection ……………………………………………………………………………………………………………..23
Case Selection.. ………………………………………………………………………………………………...24
Interviews……...………………………………………………………………………………………………...24
Documents…....………………………………………………………………………………………………...25
Direct Observations. ………………………………………………………………………………………...27
Data Analysis………………………………………………………………………………………………………………..29
Credibility and Trustworthiness…………………………………………………………………………………….31
Ethical Considerations ………………………………………………………………………………………………….31
Chapter Four: Findings…………………………………………………………………………………………………………….33
Research Question 1: What type of ADRD study opportunities are being shared with minoritized
racial and ethnic groups across ADRCs in the United States?.......................................................35
v
Promotion of studies……………………………………………………………………………….……………………36
Type of studies……………………………………………………………………………………………….…36
Means of promoting studies …………………………………………………………….…………….…37
More money, more people, no problems……………………………………………………………………..40
Paid ads and compensation... ……………………………………………………………………….…..41
Fundraising to find a cure…. …………………………………………………………….…………….…41
Research Question 2: How are ADRD study opportunities being shared with minoritized racial
and ethnic groups?.......................................................................................................................44
Learn, know, be a part of the community…………………………………………………………………..…44
Community Collaboration... ……………………………………………………………………….……..45
Social Disposition…… …....…………………………………………………………….…………….……..48
Cultural Awareness….…………………………………………………………….…………………………50
Research Question 3: Are there differences in the type of communication strategies that are
being used by the ADRCs with minoriti zed racial and ethnic groups?..........................................53
Communication loop …………………………………………………………………………………………………….54
Language Diversity…..………..….…………………………………………………………….……………54
Face-to-Face Communication …………..…………………………………….…………………………57
Additional Theme s………………………………………………………………………………………………………………..…59
Education and resources……………..... ……………………………………………………………………….……60
Opportunities for trustworthiness.... ……………………………………………………………………….……62
Deliberate resolutions……………..... …….…………………………………………………………………….……63
Chapter Five: Discussion and Implications ………………………………………………………………………………..64
Shared ADRD research study opportunities ………………………………………………………………….65
How to share ADRD study opportunities ………………………………………………………………………67
Differences in communication strategies ………………………………………………………………………69
Limitations ……………………………………………………………………………………………………………………71
Future research and recommendations ………………………………………………………………………..71
Conclusion……………………………………………………………………………………………………………………72
References……………………………………………………………………………………………………………………………….74
Appendix A: Interview Guide Questions …………………………………………………………………………………..92
Appendix B: Self-Report Questionnaire ……………………………………………………………………………………94
vi
List of Tables
Table 1. Participants’ demographic information ………………………………………………………………………26
Table 2. Region of ADRCs included and not included in this study……………………………………………33
Table 3. Themes and codes that emerged from data……………………………………………………………..…35
Table 4. List of ADRC self-reported engagement with non-English speakers and ACS data……….57
vii
List of Figures
Figure 1. Slide from a PowerPoint presentation ………………………………………………………………………38
Figure 2. Flyer promoting ADRD research studies ……………………………………………………………………39
Figure 3. Clinical study advertised on social media …………………………………………………………………40
Figure 4. Refer a friend flyer in Spanish ……………………………………………………………………………………41
Figure 5. Social media post, fundraising……………………………………………………………………………………43
Figure 6. Social media post, fundraising walk……………………………………………………………………………43
Figure 7. Social media post, community collaboration ………..……………………………………………………47
Figure 8. Flyer advertising a presentation in the community ……………………………………………………48
Figure 9. Flyer of an event in the community……………………………………………………………………………49
Figure 10. Social media post, television show ………………………………………………………………………….50
Figure 11. Document with images of diverse people………………………………………………………………..53
Figure 12. Social media post in Spanish……………………………………………………………………………………56
Figure 13. Social media post, participant story …………………………………………………………………..……59
Figure 14. Flyer of a community event…………………………………………………………………………………….60
Figure 15. Social media post, local resources ………………………………………………………….……………….62
viii
Abstract
Disparities in research participation by minoritized racial and ethnic groups persist,
despite initiatives by the National Institutes of Health , such as the Revitalization Act of 1993.
Thirty years since the Revitalization Act , barriers to minoritized racial and ethnic groups’
participation in research are cited. Limited transportation, time; understanding of research;
cultural beliefs and values are cited for their low participation rates in research studies. Most
commonly cited is mistrust as a result of past historical events and policies that contributed to
their maltreatment and thereby disparities in participation. It is for this reason the Trust in
Community-Academic Research Partnership (TICARP) framework will be used. This study will
specifically expand on the implementation of the authentic, effective, and transparent
communication dimension, a part of the TICARP framework. A multiple case study of 14
national Alzheimer’s Disease Research Centers (ADRCs) across geograp hical regions in the
United States was completed. The purpose of this dissertation is to examine communication
strategies used by different ADRCs across geographical regions in the United States. Research
personnel from ADRCs were interviewed, documents related to communication practices were
collected and an online ethnography was completed as part of this study. Findings demonstrate
what Alzheimer’s Disease and related dementias (ADRD) research opportunities are being
shared with minoritized racial and et hnic groups; how these opportunities are shared; and
potential differences in communication strategies being used by these ADRCs across racial and
ethnic groups. This information can support future endeavors by research institutions and
funders on ways that authentic, effective, and transparent communication practices can be used
ix
to establish and maintain trust thereby increasing minoritized racial and ethnic groups’
participation in research.
1
Chapter One: Introduction
Context and Background
There is an estimated 6.7 million older adults, in the United States, over the age of 65 in
2023 that have Alzheimer’s Disease (Alzheimer’s Association, 2021) . As the number of older
adults continues to increase in the United States, the percent of those that have Alzheimer’s
Disease and related dementias is also expected to rise if no cure or substantial preventive
measures are taken (CDC, 2020). Neurodegenerative diseases, such as Alzheimer’s Disease and
related dementias (ADRD) are characterized by the progressive changes and degeneration of
neurological structures, central nervous system functions and cognitive decline (Soria Lopez et
al., 2019). Dementia describes symptoms ste mming from various diseases, including: vascular
dementia, dementia with Lewy bodies, frontotemporal disorders, Parkinson’s disease dementia
and mild cognitive impairment to name a few (Advancing Research on Alzheimer’s Disease and
Related Dementias , 2021).
Memory loss is considered the most notable indicator of ADRD and is commonly
accepted to be a part of aging, which is erroneous (CDC, 2020). In addition to memory loss,
there are other symptoms related to cognitive decline indicative of ADRD, such as the inability
to concentrate, plan for the future or solve problems. Decreased use of language in speech and
writing; poor judgement in decisions; and neuropsychiatric changes in mood, personality and
behaviors are also common symptoms (Soria Lopez et al., 2019).
Advanced age, family history and genetics are the greatest risk factors for Alzheimer’s
Disease (Alzheimer’s Association, 2023) . Several genes have been implicated in increased risk of
2
Alzheimer’s Disease, however the genetic mutation or polymorphism in the apolipoprotein E
(APOE*ε4) allele indicates to have the strongest effect o n risk for late-onset Alzheimer’s Disease
(Bellenguez et al., 2022; Ferguson et al., 2020; Reitz et al., 2013; Yamazaki et al., 2019). Even so,
these biological factors alone are not the cause for development of ADRD. Additional risk factors
are attributed to, sociocultural, behavioral and environmental outcomes (Barnes & Bennett,
2014; Chin et al., 2011; Diez Roux, 2007; Glymour & Manly, 2008; Hill et al., 2015; Lines et al.,
2014; Serrano-Pozo & Growdon, 2019).
Individuals with physiological conditions such as a history of smoking, diabetes, and
other vascular diseases such as hypertension, and hypercholesterolemia have been associated
with increased risk for ADRD (Barnes & Bennett, 2014; Chin et al., 2011; Hill et al., 2015) .
Sociocultural and environmental factors like the exposure to poverty, trauma during childhood,
perceived adversity, depression, chronic stress, crime and violence have also been associated
with increased risk (Alzheimer’s Association, 2023; Barnes & Bennett, 2014; Glymour & Manly,
2008; Hill et al., 2015). Socioeconomic status (SES) associated with access to quality education,
employment and higher levels of income also impact access to healthcare, thereby influencing
the type of care and treatment received (Hill et al., 2015).
Significance
It is the intersection of all of these factors through a life course, that sets individuals at
greater risk for the development of ADRD (Chin et al., 2011; Diez Roux, 2007; Glymour & Manly,
2008; Hill et al., 2015; Lines et al., 2014). In addition, stark disparities in ADRD prevalence rates,
risk factors, disease burden and access to treatment are evident. Prevalence rates of
3
Alzheimer’s Disease among African Americans are double that of White non-Hispanic
Americans, and Latinx older adults are one -half times more likely to have Alzheimer’s Disease
compared to White non-Hispanic Americans (Alzheimer’s Association, 2021) . Inequalities in
ADRD incidence rates can also be observed among American Indian and Alaska Natives and
Pacific Islanders (Alzheimer’s Association, 2021; Mayeda et al., 2016) . Despite the disparate risk
and prevalence of ADRD among African Americans, Native Americans, and Latinxs compared to
non-Hispanic Whites, these minoritized racial and ethnic groups are underrepresented in
dementia -related research, making findings less generalizable (Gilmore-Bykovskyi et al., 2019;
Olin et al., 2002). The intentional use of the word minoritized throughout this work is used to
refer to underserved populations and highlight groups of people that have been marginalized on
the basis of their racial and/or ethnic makeup in the United States (Flanagin et al., 2021). It is for
this reason that inclusion of minoritized racial and ethnic groups that are affected the most by
ADRD is imperative in research efforts. Inclusion of more racially and ethnically diverse
participants in ADRD research would expand our understanding of how best to address risk
factors, disease burden and access to treatment and achieve health equity for all.
The enactment of the 1993 Revitalization Act by the National Institutes of Health and
subsequent initiatives have emphasized the importance of minoritized racial and ethnic groups
and women participants in research (Freedman et al., 1995). Even so, racial, and ethnic groups
continue to be underrepresented in intervention research, clinical trials, and observational
studies in the three decades since the mandate (Canevelli et al., 2019; Faison et al., 2007; Grill &
Karlawish, 2010). Recruitment practices that encourage racial and ethnic groups to engage in
ADRD research have focused on the promotion of studies and removal of logistical barriers (Grill
4
& Karlawish, 2010). Recruitment tactics that are often incorporated to increase participation by
underrepresented racial and ethnic groups include: educational efforts, community
partnerships, and promotio n of research studies (Ballard et al., 2010; Langford et al., 2010).
Barriers cited for the limited participation by underrepresented racial and ethnic groups include
limited transportation and time; limited information on research studies; cultural belief s and
values; and historical events and past policies that contributed to their maltreatment (Dilworth-
Anderson et al., 2005).
Most notably, lack of trust is touted as a prominent reason for their marginal
participation in research ; however, strategies based on a framework to develop and enhance
trust, have not been adequately developed. Trust, refers to the reliance on credible people,
groups and institutions in the development of a relationship (Resnick et al., 2015). Despite
barriers, such as mistrust, findings indicate that if given the opportunity, racial and ethnic
minority groups are equally as likely to participate in research studies as non -Hispanic White
participants (Dilworth-Anderson et al., 2005; Oh et al., 2015; Wendler et al., 2005).
Study Aims
It is therefore necessary to incorporate strategies that can establish and maintain trust
to increase participation of minoritized racial and ethnic groups in ADRD research studies. This
dissertation used a conceptual framework for trust, the trust in comm unity-academic research
partnerships (TICARP) framework. This framework identifies five trust -related factors in
community-academic research partnerships: 1) authentic, effective, and transparent
communication ; 2) mutually respectful and reciprocal relatio nships; 3) sustainability; 4)
5
committed partnerships ; and 5) communication, credibility, and problem -solving methodology.
This work sought to understand ways the authentic, effective, and transparent communication
dimension specifically is applied by Alzhe imer’s Disease Research Center personnel specifically
with underrepresented racial and ethnic communities. The principal objective of this study is to
examine:
1. What type of ADRD study opportunities are being shared with minoritized racial and
ethnic groups across ADRCs in the United States?
2. How are ADRD study opportunities being shared with minoritized racial and ethnic
groups?
3. Are there differences in the type of communication strategies that are being used by
the ADRCs with minoritized racial and ethnic groups?
Findings and implications will be presented in the following chapters. This work is based on a
multiple case study of 14 national Alzheimer’s Disease Research Centers (ADRCs) across the
United States. Communication strategies used by different ADRCs were examined. Research
personnel from ADRCs were interviewed, documents related to communication pr actices were
collected and an online ethnography was completed.
6
Chapter Two: Literature Review
Health disparities persist across racial, ethnic, and gender minority groups in the United
States. Differences have been documented in a range of medical condi tions such as
cardiovascular diseases, cancer, chronic diseases, HIV, maternal health and mortality, mental
health and in Alzheimer’s Disease and related dementias (ADRD) (Boonyasai et al., 2022; Eley et
al., 1994; Ferretti et al., 2018; Frank et al., 2014; Gillum et al., 2011; Mayeda et al., 20 16; Mehta
& Yeo, 2017). Corroboration of differences in prevalence, risk factors, disease burden and access
to treatment by racial and ethnic groups exist, but disparities also persevere in intervention
research, clinical trials, and observational studi es aimed to eradicate health disparities. This is
particularly important to examine as research funding and research efforts toward these studies
require generalizability to those that are most affected and thereby benefit the most from these
scientific ad vances in healthcare.
Between January 1, 1995 and December 31, 1999, the number of racial and ethnic minority
participants that were a part of new drug research, classified as new molecular entities (NME)
research by the Federal Drug and Administration (F DA), accounted for only 17% of 185 studies
(Evelyn et al., 2001). Race and ethnicity for only a little over half, 53%, of the participants in
these studies was designated. The remaining 47% of the participants’ race and ethnicit y was not
determined. Marginal inclusion of racial and ethnic minorities is evident across a myriad of
research interventions, clinical and mental health research studies (Banda et al., 2012; Branson
et al., 2007; Evelyn et al., 2001; George et al., 2014; Hussain-Gambles et al., 2004; Lim et al.,
2021). Participation by racial and ethnic minorities in ADRD research is analogous. A systematic
review between 1996 and 2018 of forty-nine unique randomized control trials reported a
7
majority of participants to be White and only 4.4% of all participants combined for these studies
to be African American or Latinx (Canevelli et al., 2019). Similar disparities in participation in the
Alzheimer’s Disease Cooperative Study (ADCS) and industry -funded Alzheimer’s Disease
pharmaceutical randomized controlled trials (Faison et al., 2007). Of the 737 participants in the
ADCS study, only 10% of were non-White (Faison et al., 2007). Only 350 of 10,800 participants in
industry funded pharmaceutical trials (3.3%) were non -White participants in industry-funded
research trials (Faison et al., 2007).
African Americans, Latinxs, Native Americans and other minoritized racial and ethnic groups
are often grouped together in ADRD research tri als and are not representative of the sub-
population that are most affected by ADRD (Gilmore-Bykovskyi et al., 2019; Mayeda et al., 2016;
Olin et al., 2002). As a result of underrepresented racial and ethnic groups in ADRD research
findings are less generalizable and access to preventative and treatment options are also limited
(George et al., 2014; Miranda et al., 2003; Office of the Surgeon General (US) et al., 2001) .
Furthermore, advancements in precision medicine are also restricted because of racial and
ethnic groups’ marginal participation , and inadequate or no report of race and ethnicity in
research studies (Berger et al., 2009; Canevelli et al., 2019; Corbie-Smith et al., 2003; George et
al., 2014; Ma et al., 2007; Mensah et al., 2019). This is significant because t he onset of ADRD,
cognitive decline and other neuropsychiatric symptoms may range in severity, present
differently symptomatically, and present earlier among some racial groups (Canevelli et al.,
2019; Yaffe et al., 2013) . Consequentially, these differences are important to consider given the
disproportionate access to a diagnos es, access to treatments and support services for
minoritized racial and ethnic groups (Yaffe et al., 2013) .
8
Marginal participation by minoritized racial and ethnic groups in ADRD research, however, is
attributed to a myriad of barriers. Commonly cited barriers include minoritized racial and ethnic
groups’ limited access to transportation and spare time; knowledge of the research process;
cultural beliefs and values; and historically racist events, policies and experiences in a medical
setting (Gilmore-Bykovskyi et al., 2019; Grill & Karlawish, 2010; Olin et al., 2002). Efforts to
undertake these barriers, include the endorsement of community partnerships, improved
education, promotion of research studies, and the removal of logistical , structural and systemic
barriers (Aranda et al., 2023; Ballard et al., 2010; Dilworth-Anderson & Williams, 2004; Grill &
Karlawish, 2010; Langford et al., 2010). For example, collaborations with community clinics and
organizations have been used as a way to connect researchers into these communities where
ADRD education and ADRD research studies can be shared (Grill & Galvin, 2014). In addition, to
these recruitment strategies, techniques that incorporate research personnel that share the
language and culture of partici pants in the community is very important (Amador et al., 2006;
Aranda et al., 2003; Mendez-Luck et al., 2011).
Addressing these barriers, providing communities with concrete benefits to their
participation and providing comprehensive information related to their participation has proved
to increase willingness by older African Americans to participate in research studies (Dilworth-
Anderson et al., 2005; Nápoles-Springer et al., 2000). Despite endorsement of these strategies
that address barriers to ADRD research participation , lack of trust is most frequently cited as an
impediment and solutions are not clearly specified (Corbie-Smith et al., 2002; Dilworth-
Anderson et al., 2005; George et al., 2014; Grill & Karlawish, 2010; Lang et al., 2014).
Researchers frequently cite lack of trust and the aforementioned barriers as contributing factors
9
for racial and ethnic groups’ limited involvement in ADRD research studies. However, findings
indicate that, if given the opportunity, minoritized racial and ethnic groups are equally as likely
to participate in research studies as non -Hispanic White participants (Dilworth-Anderson et al.,
2005; Freedman, 1998; Green et al., 2000; Oh et al., 2015; Wendler et al., 2005). A
comprehensive literature review of research studies that provided consent data by race or
ethnicity was reviewed by researchers (Wendler et al., 2005). Their empirical data
demonstrated that of the over 70,000 participants enrolled in health research studies, there
were differences in invitations to minority groups to participate in clinical and surgical
interventions (Wendler et al., 2005). However, they found that minoritized racial and ethnic
groups were, “…As willing to participate, and in some instances more willing to participate, in
health research than non-Hispanic Whites, when eligible and invited to participate. ” (Wendler et
al., 2005, p.0201) It is for this reason, that assertion s for minimal participation by racial and
ethnic groups due to mistrust, should be carefully considered and examined.
Trust
The conceptualization of trust, types of trust and components considered a necessary
part of trust vary (Cooper, 1985; Larson et al., 2018; Robbins, 2016). Scholars cite differences in
the construct of trust dependent on the type of relationship s as they pertain to family, friends,
communities and institutions and their unique experiences for example (Cooper, 1985; Larson
et al., 2018; Robbins, 2016). For purposes of this study, trust will be defined a s a social
expectation that those in positions of authority will not violate those in vulnerable positions;
rather, they will provide the utmost care, service, information, and resources available so as not
to harm or interfere with the relational dynamic (Frerichs et al., 2017; Griffith et al., 2020; Kass
10
et al., 1996; Mechanic, 1998). Depending on the outcome of the social expectation of those in a
vulnerable position, received by those in a position of authority, perceptions of trustworthiness
in this relational dynamic may be affected (Cooper, 1985; Crawley, 2001; Griffith et al., 2020,
2021).
Trust between patients and health systems, medical providers, pharmacists, researchers,
and other medical professionals has been associated with favorable treatment adherence,
endorsement of treatments, higher healthcare utilization rates, self -reported health status, and
participation in research (Hall et al., 2002; Ozawa & Sripad, 2013). In an effort to operationalize
trust, several measures have been created to comprehend the impact of varying degrees of
trust, has on the health system, including medical research (Doescher, 2000; Dugan et al., 2005;
Goold, 1998; Hall et al., 2002; Jaiswal, 2019; LoCurto & Berg, 2016; Mainous, 2006; Ozawa &
Sripad, 2013). Common content areas captured by these trust measures include
communication, quality, and exchange of information; honesty, the level of transparency and
integrity in a relationship; competency, the perception that those in authority are qualified and
trained to provide services; and confidence, a sense of reliance (Hall et al., 2006; Ozawa &
Sripad, 2013; Smirnoff et al., 2018). Although there have been significant efforts in measuring
trust, a more developed understanding of factors that influence underrepresented racial and
ethnic groups’ perception of trust is imperative. By exploring the role of these factors as they
relate to trust between these groups and physicians/principal investigators of ADRD research,
we can then better address and overcome this significant barrier to their participation. Findings
indicate that a trustworthy researcher such as a physician/principal investigator can play a role
in individuals’ participation in research studies (Corbie-Smith et al., 1999; Smirnoff et al.,
11
2018).This is especially important as lack of trust is frequently cited for minoritized racial and
ethnic groups’ marginal participation in research studies (Braunstein et al., 2008; Corbie-Smith
et al., 1999, 2002; Crawley, 2001; Dilworth-Anderson & Cohen, 2010; Ejiogu et al., 2011; Jacobs
et al., 2006; Noah, 2003; Pariera et al., 2017; Scharff et al., 2010; Wil liamson et al., 2019; Winter
et al., 2018; Wrobel & Shapiro, 1999).
Lack of trust is often described as mistrust, a feeling of suspicion and apprehension
toward something, or someone based on direct or indirect past experiences (Griffith et al.,
2021). As a result of both undocumented and documented occurrences, minoritized racial and
ethnic groups’ mistrust of medical institutions, medical professionals, and medical causes is
rational (Freimuth et al., 2001; Katz et al., 2008). The Tuskegee Syphilis Study that intentionally
withheld treatment from African Americans; the use of Henrietta Lacks’ cells without her
knowledge or consent for profit in the name of advancing science are only a couple of examples
(Freimuth et al., 2001; Nature, 2020). Intergenerational mistrust and vicarious experiences like
the intentional exposure of venereal diseases to the Guatemalan people (Spector-Bagdady &
Lombardo, 2018); and the misleading research intentions of biospecimen collected from the
Havasupai Tribe (Sterling, 2011), are additional examples of warranted mistrust. These and
other occurrences are unfortunately not just a part of the 20
th
century, but still happening in the
present 21
st
century. Forced hysterectomies, unnecessary gynecological procedures, and other
medical treatments without consent of Immigration and Customs Enforcement detainees in
2020 have been documented (Manian, 2020).
These incidents demonstrate the influence and justified mistrust or suspicion of research
studies (Durant et al., 2011; Katz et al., 2008; Katz, Kegeles, et al., 2008; Paskett et al., 2008) . In
12
addition, to these types of exploitation of minoritized racial and ethnic populations in medical
research, explicit as well as implicit encounters of discrimination contribute to mistrust
(Smirnoff et al., 2018) . Despite these and countless other incidents experienced by minoritized
racial and ethnic groups, few directives have been offered on how to establish, and develop
trust and increase their participation in research (Christopher et al., 2008; Fischer et al., 2017;
Frerichs et al., 2017; Green et al., 2013; Watson et al., 2014; Wesson et al., 2019)
Alzheimer’s Disease Research Centers
The National Institutes of Health (NIH) Revitalization Act of 1993 has provided guidelines
for applicants and recipients of NIH-funded clinical research to include “women and minority
groups and their subpopulations” unless there are compelling circumstances and rationale for
their exclusion (Freedman et al., 1995). Guidelines of the act, stipulate the following: “ In
conducting or supporting clinical research f or the purposes of this title, the Director of NIH
shall...ensure that (a) women are included as subjects in each project of such research; and (b)
members of minority groups are included in such research.” (Freedman et al., 1995, p. 277) In
addition, “ the circumstances under which the inclusion of women and minorities as subjects in
projects of clinical research is inappropriate; the manner in which clinical trials are required to
be designed and carried out; and the operation of outreach programs.” (Freedman et al., 1995,
p.277)
Currently, there are 33 Alzheimer’s Disease Research Centers across the United States,
that are funded by the National Institute on Aging (NIA), an institute that is a part of the
National Institute of Health (NIH ) (U.S. Department of Health & Human Services & National
13
Institute on Aging, 2021) . These Alzheimer’s Disease Research Centers (ADRCs) are in 22 unique
states and work in conjunction with renown ed medical institutions. Resear ch advances on ADRD
prevention, diagnoses, and treatments are led by interdisciplinary researchers at these centers
(Advancing Research on Alzheimer’s Disease and Related Dementias, 2021) . Future research
opportunities are expected to increase in the coming years as the estimated NIH funding for
research related to ADRD reaches $3.87 billion (Looking Forward, 2022). Research study
opportunities related to dementia care, epidemiology, disease pathology and pathogenesis, as
well as translational and clinical interventions are anticipated in the comin g years (Looking
Forward, 2022).
As part of these research efforts, ADRCs are incorporating a multidisciplinary approach.
A wide range of ADRD research studies at these centers have transpired and facilitated
opportunities for collaboration. Tasks within these research centers are delegated through
research cores, which are comprised of experts in the areas of biomarkers, genetics,
neuroimaging, neuropathology, neuroimmunology, data management and statistics, among
others. The Outreach, Recruitment and Engagement (ORE) core specifically at each of these
centers, is responsible for engaging with community members and potential research
participants. ORE core leaders, co -leaders, and other research personnel whose work
responsibilities involve recruitment efforts related to ADRD studies at these centers, have been
interviewed as part of formative work for this study. Outreach, Recruitment and Engagement
core leaders, co-leaders, and other research personnel participants were interviewed. Findings
from this work found that participants endorsed the application of strategies used to establish
14
and maintain trust, based on the trust in community-academic partnership (TICARP) framework.
Participants endorsed each dimension in varying degrees.
Conceptual Framework
Researchers have identified barriers to minoritized racial and ethnic groups’ participation
in research studies, while recommending recruitment strategies that facilitate these barriers
(Berger et al., 2009; Grill & Galvin, 2014; Grill & Karlawish, 2010). Recommendations such as
increased advertisement of ADRD research trials, increased education related to the research
process, access to transportation, and less rigid eligibility criteria are commonly shared (Branson
et al., 2007; Grier & Bryant, 2005; Grill & Galvin, 2014; Grill & Karlawish, 2010). These
guidelines, however, have not provided sufficient direction on how to address the greatest
barrier to recruitment cited by many, trust. This barrier in particular, necessitates it to be
addressed in a unique manner given the history of maltreatment of these groups of people in
medical research.
A framework on trust, has yet to be used as a guide to establish and maintain trust
between minoritized racial and ethnic communities and academic research partnerships, more
specifically to increase their participation in ADRD research. Trust, as an abstract construct
within this context must be explored and expanded upon in order to provide solutions that
influence marginal participation from these groups. It is for this reason that the trust in
community-academic research partnerships (TICARP) framework will be used as the
underpinnings for this dissertation work.
15
A mixed-method concept mapping was used to generate, organize, evaluate, and
interpret stakeholders' perspectives on trust for the development of this framework (Burke et
al., 2005; Dave et al., 2018; Trochim, 1989; Trochim et al., 1994). Insight from different
stakeholders including community members, healthcare providers, and academic researchers
were integrated using this approach. This process yielded five dimensions, that influence trust in
community-academic research partnerships (Dave et al., 2018). The trust in community-
academic research partnerships (TICARP) framework identifies five trust -related factors in
community-academic research partnerships: 1) authentic, effective, and transparent
communication ; 2) mutually respectful and reciprocal relationships ; 3) sustainability; 4)
committed partnerships ; and 5) communication, credibility, and problem -solving methodology.
Authentic, effective, and transparent communication was recognized as one of the most
important factors in establishing and maintaining trust in academic-research relationships.
Formative work for th is dissertation, explored the application of each of the five dimensions by
research personnel representing fourteen different ADRCs across the United States. Preliminary
findings of this exploratory work indicated that integration of sustainable and authentic,
effective, and transparent communication practices was least endorsed by research personnel
across ADRCs. The authentic, effective, and transparent communication dimension is defined as,
different types of ongoing communication between a community an d an academic research
institution in partnership (Dave et al., 2018). Examples of this ongoing communication include:
face to face meetings, transparency about history of mistrust between communities, being
culturally appropriate, and the use of language that everyone can understand (Dave et al.,
2018). Findings from the original work in the development of this framework, demonstrate the
16
pertinence of authentic, effective, and transparent communication in establishing and
maintaining trust (Dave et al., 2018).
Preliminary Data
The preliminary study that guided this dissertation was completed in 2022. Leaders and
co-leaders of the Alzheimer’s Disease Research Centers in the United States core leaders, co-
leaders, and other research staff involved in recruitment efforts for an ADRC, were emailed and
asked to participate in an interview for the original qualitative study. Research personnel (n=25),
representative of 14 of the national ADRC ORE cores and 2 research personnel a part of the
California ADRC were interviewed and participated in this study. Publicly available information
on NIH and ADRC websites was used to identify Outreach Recruitment and Engagement (ORE)
core leaders, co-leaders, and other research staff involved in recruitment efforts into ADRC
studies. Study solicitation of participants w as done electronically, via email introductions. Open -
ended questions were asked and allowed participants to respond openly about each dimension
of TICARP being implemented in their ADRC, their experience and insight.
The study more specifically examined: 1) What TICARP dimensions were being used by
ADRD study personnel to create and maintain trust? 2) Any differences in ADRD research study
participation among ADRD research studies that endorsed the “authentic, effective &
transparent communication” dimensi on and 3) Any differences in dimensions endorsed by study
personnel in recruiting minoritized racial and ethnic groups? All interviews were video and
audio recorded using Zoom, an online videoconferencing platform. Audio recordings of the
interviews were transcribed and reviewed by the interviewer for accuracy (Braun & Clarke,
17
2020). The application of the TICARP framework, which highlights the dimensions of trust was
used to complete a deductive thematic anal ysis (Braun & Clarke, 2020).
Findings from this preliminary study demonstrated that all respondents from the sites
endorsed the use of all TICARP dimensions to create and maintain trust. There was, however,
minimal endorsement of the authentic, effective, and transparent communication practices
used across ADRCs by the research personnel interviewed. In addition, few research personnel
described specific needs and communication practices when working with minoritized racial
and ethnic groups. These findings and formative work have thereby inspired this dissertation
study.
Social Work Implications
Disparities in ADRD research inevitably impact disparities in ADRD prevalence, risk factors,
disease burden and access to treatment. These disparities persist despite the NIH Revitalization
Act of 1993, other initiatives and significant federal funding for research in the United States
(Aranda et al., 2023; Freedman et al., 1995). Barriers to minoritized racial and ethnic groups’
marginal participation in ADRD research have been identified and facilitators to these barriers
have been evoked. This is especially important as social justice , a tenet of social work, requires
equal access and opportunities to economic, political and social resources and benefits to all
individuals (Atteberry -Ash, 2022). In the context of health care access and opportunities, health
disparities p ersist (Dilworth-Anderson et al., 2012). This dissertation will work toward health
equity by incorporating the trust in community-academic research partnerships (TICARP)
framework. Effective strategies on how to create and maintain trust, to address the barrier of
18
mistrust has not been examined in the context of recruiting minoritized racial and ethnic groups
into ADRD studies, in order to achieve health equity in Alzheimer's Disease and related
dementias research.
19
Chapter Three: Methods
There is a need to advance the recruitment of underrepresented racial and ethnic
groups in ADRD research. This dissertation will contribute to the future incorporation of
strategies based on evidence and increase study participation of these populations. In
accordance with the present state of recruitment science, a qualitative research approach was
implemented to answer the following research questions.
1. What kind of ADRD study opportunities are being shared with minoritized racial and
ethnic groups across ADRCs in the United States?
2. How are ADRD study opportunities being shared with minoritized racial and ethnic
groups across ADRCs in the United States?
3. Are there differences in communication practices being used by the ADRCs when
communicating ADRD studies with minoritized racial and ethnic groups?
These questions transpired as a result of previous qualitative study interviews, with participants
(n=25). Preliminary findings of this study suggested all dimensions of trust according to the
TICARP framework were being implemented by researchers in varying degrees across ADRCs.
More importantly, this formative study indicated there were limited authentic, effective, and
transparent communication strategies that were culturally relevant to different racial and ethnic
groups and sparse authentic, effective, and transparent communication strategies that were
linguistically appropriate. It is for this reason that this will be expanded on, in this dissertation.
20
Given the current state of strategies implemented by ADRCs, a qualitative multip le case
study, was selected as it would appropriately provide more comprehensive insight to these
questions. This approach was adequate and necessary as the author sought to understand a
contemporary phenomenon expressed in a real-world context (Rowley, 2002; Yin, 1999). In this
study, the phenomenon is trust in community-academic partnerships between ADRC research
personnel and minoritized rac ial and ethnic groups’ participation in research studies. Below I
discuss sampling, research design, data collection and analysis.
Sampling
For this study, interviews with representatives of national NIH funded ADRCs were
included. Publicly available information on NIH and ADRC websites was used to identify
Outreach Recruitment and Engagement (ORE) core leaders, co-leaders, and other research staff
involved in recruitment efforts into ADRC studies. Information such as names and email
addresses were collected and used to contact participants. All leaders and co -leaders of the 33
Alzheimer’s Disease Research Centers in the United States were emailed requesting their
participation in this formative study during spring 2022. ORE core leaders, co-leaders, and other
research staff involved in recruitment efforts for an ADRC, that participated in the origin al study,
were asked to participate in this research study. Research personnel, representative of 14 of the
national ADRC ORE cores responded and were asked to be interviewed for this study. Two of
the participants that were a part of the original study w ere not contacted, as they were a part of
the state funded, California Alzheimer’s Disease Center and not an NIH funded ADRC.
Participants from each of the national ADRCs were contacted up to three times via email,
requesting their participation for this r esearch study. Two research personnel from the same
21
ADRC were unresponsive; one researcher from an ADRC that was originally included in the first
study declined to participate; and one research personnel was no longer working at the ADRC.
Snowball sampling and purposive sampling was used to recruit new participants that met
eligibility criteria to be a part of this study. Research personnel (n=17) representative of 14
distinct national ADRCs were included in this study. Of the 14 ADRCs that were a part of t his
study, 2 ADRCs that were not a represented in the original study were included, and 4 research
personnel, had not participated in the original study.
Multiple Case Study
The purpose of this study was to examine what type of ADRD study opportunities a re
being shared with minoritized racial and ethnic groups by ADRCs ; how study opportunities are
being shared with these groups and examine potential differences in the strategies being used
between racial and ethnic groups. The TICARP framework, describes trust between
communities and academic research partnerships as a relational process comprised of five
dimensions. Preliminary findings of the original study, indicate the endorsement by ORE core
research personnel from various ADRC sites that endorsed authentic, effective, and transparent
communication practices. However, details about what research study opportunities were
communicated and how they were communicated to minoritized racial and ethnic groups was
limited. To expand on the research questions p osed, a case study design was necessary in order
to verify findings through multiple data sources.
The national ADRCs represented in these interviews (n=14), are the unit of analysis, or
overarching cases in this study (Rowley, 2002). This approach allows for a more in-depth
22
examination of authentic, effective, and transparent communication practices by ADRCs through
multiple data sources, providing a more holistic perspective. I selected to study the application
of strategies used in ADRCs to encourage participation by marginalized racial and ethnic groups
for the following reasons. Firstly, it is important to examine strategies implemented in the
participation of minoritized racial and ethnic groups using a conceptual framework of trust. This
is particularly pertinent, as trust is commonly cited as a barrier rather than something that can
be changed or improved on. Secondly, communication strategies endorsed by research
personnel, with the intention to share information related to the ADRCs and ADRC studies with
minoriti zed racial and ethnic groups should be more deliberately examined. Lastly, I wanted to
examine the authentic, effective, and transparent communication practices specifically between
ADRCs and minoritized racial and ethnic groups and potential differences in how they were
considered and being implemented. The conventional use of a case study among clinicians often
refers to an anomaly that focuses on descriptive individual accounts or cases (Lee et al., 2010).
In contrast, multiple case study methodology, like the research design of this study, can include
units of analysis that include individual persons, groups of people, organizations, or
communities facilitating the examination o f multiple individual units (Lee et al., 2010; Yin,
1981).
Multiple case study research provides an opportunity for an in -depth exploration of
a contemporary phenomenon expressed in a real-world context through the use of quantitative
and qualitative methods of data collection and analysis (Lee et al., 2010; Yin, 2018). A hallmark
of case study research is that it requires multiple sources of evidence to allow for comparison,
replication and validation of findings, or triangulation (Ebneyamini & Sadeghi Moghadam, 2018;
23
Rowley, 2002; Yin, 2000, 2012). Sources of data may include, physical artifacts , such as tools,
artwork, artifacts, or other tangible evidence; archival records, including organizational records,
charts, maps, survey data and personal diaries; participant observations , in which the
researcher may take part in the events being studied, for example living in a neighborhood that
is the focus of a case study. This differs from direct observation , as the researcher would
formally or informally make observations of behaviors on the field; documentation , include
letters, agendas, announcement of events and other written materials; and lastly interviews
with participants that are 1) aligned with the research questions and a study protocol and 2)
administered in a conversational and unbiased man ner (Yin, 1994). In addition to these multiple
sources of data, various methods for data collection also exist (Gilgun, 1994). The selection of
methods used in case study research was guided by the research questions (Yin, 2013). In
addition to the in terviews with representatives of 14 national ADRCs (n=17), a content analysis
of documents shared with racial and ethnic groups related to the ADRC and ADRC studies and a
digital ethnography was completed for each center. Findings from the preliminary study,
indicated the endorsement of all dimensions of trust by research personnel. It for this reason,
that additional methods of data collection were necessary to understand the type of study
opportunities being shared, how they are being shared and potential differences in
communication practices.
Data Collection
As part of this multiple case study, qualitative methods were used to explore ADRD study
opportunities being shared with minoritized racial and ethnic groups across; how they were
being shared; and potential differences in communication strategies used with minoritized racial
24
and ethnic groups. Research personnel affiliated with each a national ADRC were interviewed
(n=17). In addition, documents shared with minoritized racial and ethnic groups by A DRCs about
ADRD studies were requested and obtained from each ADRC representative after their
interview. An analysis of direct observations on social media was also completed for this study.
Case Selection
The selection of ADRCs for this study was done prior to data collection. The majority of ORE
core research personnel representative of the 14 ADRCs included in this study had participated
in the original study, which enabled case selection. The identified cases were bound as ADRCs
with ORE cores involved in outreach and engagement events with racial and ethnic
communities, completed in the past year, from January 2022 - December 2022. Selection of this
criterion is important as part of the design phase of case study research and for the examination
of authentic, effective, and transparent communication practices being applied by each of the
selected ADRCs (Yin, 2013).
Interviews
Participants for this study, except for 4 had been a part of the original study and had
been previously interviewed, spring 2022, on strategies they incorporated at their ADRC to
establish and maintain trust with underrepresented groups. Participant solici tation for this study
was done via email, spring 2023. Outreach, Recruitment and Engagement (ORE) core leaders,
co-leaders, or other research personnel, from 14 distinct ADRCs were asked to be a part of this
study. All participants that agreed to participa te, were over the age of 18; had to be currently
affiliated with the ORE core and involved in the recruitment of minoritized racial and ethnic
25
groups into ADRD studies; and willing to be audio and/or video recorded during the interview.
Initial emails sent , yielded 7 participants. A second follow -up email was subsequently sent to
participants that did not respond to the initial email, yielding 6 participants. A third and final
invitations asking for their participation and referrals (snowball sampling) yiel ded 4 additional
participants. A total of 17 participants volunteered to be interviewed as part of this study.
All interviews with participants were completed via Zoom, an online video conferencing
platform. Emails were sent to each participant prior to t he scheduled interview including, the
interview questions, meeting details and an online questionnaire. Participants were asked to
complete a questionnaire developed by the investigator via Qualtrics XM that explained the
purpose of the study, confirmed th eir eligibility, and voluntary participation. The questionnaire
also included closed items related to authentic, effective, and transparent communication
practices at their ADRC. More specifically queries on communication practices; and the means
of communication of ADRC studies with underrepresented racial and ethnic groups. Participant
responses to these questions were reviewed by the investigator prior to the interview, to inform
questions during the interview on specific practices of communication and e ngagement.
A semi-structured interview guide was developed and used during each of the
interviews with participants. ADRC research personnel were asked to share their personal
insight and experience with communication practices implemented at their center , when
engaging with underrepresented racial and ethnic groups. Open-ended questions in the
interview guide provided the opportunity for discussion on types of communication practices
available in different languages or engagement practices that were cultu rally relevant.
Questions on study opportunities shared and best practices when engaging with
26
underrepresented groups and effective and ineffective communication practices were also
asked during the interviews (Appendix A). Additional probing and opportuni ties for clarification
during the interviews was provided. In total, 17 interviews were completed with research
personnel from 14 ADRCs. ADRC research personnel interviewed include ORE core leaders, co-
leaders, principal investigators of ADRC studies, recr uitment coordinators involved in ADRC
study recruitment efforts. The majority of participants were women (n=14), identified as White
and had a professional or doctoral degree (Table 1). On average each interview was
approximately 34 minutes, totaling over 9.5 hours. Each interview was video, and audio
recorded. The audio recordings were then transcribed and reviewed by the principal
investigator for accuracy and were then analyzed.
Table 1
Participants’ demographic information
Interviewee
Identifier Gender Race/Ethnicity Level of Education
01 Woman Black or African American Professional or Doctorate Degree
02 Man Hispanic or Latinx Professional or Doctorate Degree
03 Man White Professional or Doctorate Degree
04 Woman White Master's Degree
05 Woman Hispanic or Latinx Professional or Doctorate Degree
06 Woman White Professional or Doctorate Degree
07 Woman White Professional or Doctorate Degree
08-1 Woman White Master's Degree
08-2 Woman Hispanic or Latinx Master's Degree
09 Woman Black or African American Professional or Doctorate Degree
27
10-1 Woman White Master's Degree
10-2 Woman Black or African American Bachelor's Degree
11 Woman Hispanic or Latinx Master's Degree
12 Woman White Master's Degree
13-1 Woman Hispanic or Latinx Professional or Doctorate Degree
13-2 Woman Asian or Asian American Professional or Doctorate Degree
14 Man White Professional or Doctorate Degree
Documents
As a part of this study, participants were asked to provide a minimum of 5 documents
used to share information related to their ADRC or ADRC studies with minoritized racial and
ethnic groups. This method has been widely used by qualitative researchers and is suitable
given the research aims of this study (Kleinheksel et al., 2020; Yin, 2018). Documents provided
by participants included but was not limited to: referral forms, materials shared at community
events, PowerPoint slide presentations, study flyers, c onference or lecture flyers, post cards,
templates of letters, and brochures of studies. Duplicate versions of documents were not
included as part of the content analysis. All documents collected by the principal investigator for
each ADRC, were publicly available for external review. No internal documents were requested
or collected.
Direct Observations
In addition to the aforementioned sources of data collection, direct observations on
social media were also completed and analyzed. Observations of people in their environment
28
provides insight of contemporary phenomenon expressed in a real-world context (Yin, 2012). In-
person, direct observations of authentic, effective, and transparent communication practices at
each of the 14 ADRCs would require plenty of time and financial resources. Fourteen ADRCs
included in this study are in different cities and in twelve states. In addition, authentic, effective,
and transparent communication practices often cited by each ADRC require engagement at
events within the community, that occur frequently throughout the year. In-person data
collection of these type of direct observations for this study was not feasible, given the timely
and financial constraints for this study.
Moreover, due to the COVID-19 pandemic, recruitment for studies halted and
organizations, like ADRCs were unable to engage and interact with community members in -
person. The use of technology and social media as alternative means of communication has
been exponentially adopted and is expected to continue (Almeida et al., 2020). For this study,
communicative content related to ADRD study opportunities and ways in which these studies
are shared was of particular interest. I t is for this reason that direct observations on social
media or a digital ethnography of ADRC social media accounts was completed (Murthy, 2008;
Yin, 2018). Social media accounts on each ADRC website, were identified a priori data collection.
Four ADRCs did not have an exclusive social media account and linked the broader university or
medical school’s social media account as a part of their website. Posts and comments for these
accounts were only analyzed if they were relevant to Alzheimer’s Disease and related dementias
and included the following key words: Alzheimer’s, Alzheimer’s Disease, Parkinson’s, Parkinson’s
Disease, Huntington’s, Huntington’s Diseas e, Lewy Body, brain, healthy brain, memory,
cognition, mind, dementia. All social media posts and comments made by ADRCs with exclusive
29
social media accounts were collected and analyzed. Digital ethnographies on the social media
platform for each ADRC betw een July 1, 2022, and December 31, 2022 were collected. Data
collected on each social media account was published online and publicly available.
Data analysis
The purpose of this study was explained to every participant interviewed prior to the
interview and ample opportunity to answer questions and clarification was given. During the
interview I actively listened to their responses to ensure the participants openly disclosed their
personal experiences related to the types of ADRD study opportunities ar e being shared with
minoritized racial and ethnic groups at their ADRC (RQ1) and how they are being shared (RQ2).
During the interview, participants were shown a slide on the screen indicating the
communication practices they had selected on the questionna ire and were probed on these
practices specifically. I followed the direction of the interview guide questions, using probing
questions and asking more about topics that transpired as a part of the responses that
interviewees gave. In addition, I completed field notes during the interviews documenting
thoughts or questions that would emerge throughout the interview (Maxwell, 2012). At the end
of each interview, I thanked each participant for their time and requested they provide 5
documents that are shared about the center or studies to underrepresented racial and ethnic
groups. I also followed-up with an email to each participant requesting the documents,
providing examples, and emphasizing the request of publicly shared materials. I completed
analytic memos after each interview noting initial thoughts and reflec tions on the data
(Maxwell, 2012).
30
Automated transcriptions of each interview and audio recordings were downloaded via
Zoom. I listened to every audio recording and edits were made to transcriptions to reflect the
interviews accurately. Names of participants were removed and were replaced with an
identificati on number. Other identifying markers such as city names, location or mention of
colleagues were removed. These anonymized transcripts were then securely uploaded to NVivo
software for analysis. Cases for each of the unique ADRCs were created in NVivo, and these
transcriptions were then assigned to each corresponding case. Documents and screenshots of
social media posts were collected and uploaded, to each corresponding case in NVivo for
analysis.
I applied a priori codes related to a dimension of the TICARP conceptual framework, that
was used for this study. Within the authentic, effective, and transparent communication
dimension, items identified were categorized and collapsed into preliminary codes. These codes
were used as a part of the initial codeboo k. After reviewing the first few transcripts, documents
and social media posts, additional codes emerged. This iterative and comparative process was
applied (Braun & Clarke, 2006, 2020). As additional codes and subcodes transpired, the
codebook was expanded and included definitions and examples for each of the data sources
(i.e., transcripts, documents, social media posts). Through comparison of categories identified
and the condensing of subcategories, final codes and themes emerged unique to
communication practi ces used with racial and ethnic groups. During this process, anomalies or
typical practices shared by these cases transpired. A deductive thematic and content analysis
was appropriate for this study as it allowed for the identification of these themes acro ss
multiple sources of data (Braun & Clarke, 2006).
31
Credibility and Trustworthiness
Trustworthiness and credibility of this multiple case study was established through
several strategies used throughout this study. First and foremost, triangulation of findings was
done by using multiple data sources. Initial findings from the original exploratory study
completed, demonstrated the need for this type of approach given the endorsement of
practices used to establish and maintain trust by all ADRCs to varying extents, without data
collected supporting these claims. Triangulation of interview data from research personnel at
ADRCs, documents and social media posts were all used to demonstrate communication
practices incorporated at each of these organizations and crystallize findings (Maxwell, 2012;
Yin, 2013). Data from each unique data source allowed for insight that would not otherwise be
obtained or verified from a singular data source. Inevitably, triangulation from multiple data
sources also allows for evidence of findings to be confirmed or opposed through the different
types of data analyzed. In addition, I completed member checks with interviewees. The initial
four participants were given the transcription of their interview and the opportuni ty to review,
confirm and edit their responses (Creswell & Creswell, 2017; Maxwell, 2012). Throughout this
process, meetings with colleague s, trained on qualitative methods, were held to discuss and
ensure accuracy and development of emerging codes and assessment of findings based on the
data (Creswell & Creswell, 2017; Maxwell, 2012).
Ethical Considerations
This study posed minimal risk to participants and was approved and determined to be
exempt by the University of Southern California Institutional Review Board. Throughout the
32
study from the outset of soliciting their participation in the study, participant s were made aware
of the general intent of the study and the importance of this study in advancing health equity
among minoritized racial and ethnic groups. Participants were informed about their voluntary
participation in the study and their anonymity. Ot her identifiers, such as city names, and
references to colleagues would also be de-identified prior to data analysis. In addition, I only
included publicly shared documents obtained by each participant as part of the analysis.
Similarly, publicly available social media content only posted by the organization was analyzed.
33
Chapter Four: Findings
Effective strategies on how to create and maintain trust, to address the frequently cited
barrier of mistrust has not been examined in the context of minoritized racial and ethnic groups
participation in ADRD studies. This study explored authentic, effective, and transparent
communication practices, a part of the TICARP framework, used with minoritized racial and
ethnic groups at different ADRCs. The principal obj ective of this study was to examine what
type of ADRD study opportunities are being shared with minoritized racial and ethnic groups
across ADRCs in the United States. The second objective of this study is to examine how ADRD
study opportunities being shar ed with minoritized racial and ethnic groups ; and the final
objective of this study was to explore potential differences in the type of communication
strategies that are being used by the ADRCs with minoritized racial and ethnic groups .
As part of the preliminary study, all 33 ADRCs were emailed to participate. However, t he
results of this study are based on 14 unique cases of ADRCs in the United States (Table 2).
Grouping of the ADRCs included in this study are based on the United States census’ regions
and divisions (US Census Bureau, 2021b). A notable difference between the sites that did not
participate in this study is that 8 of them a re in west or southwest regions. Of these ADRCs that
did not participate, 5 of them are located in California , one of the most racially, ethnically and
linguistically diverse states in the country (Public Policy Institute of California, 2023; US Census
Bureau, 2023).
Table 2 Region of ADRCs included and not included in this study
34
Region of the United
States ADRC located
Number of ADRC(s)
included in this study
Number of ADRC(s) not
included in this study
West 1 6
Southwest 1 2
Midwest 4 5
Southeast 4 1
Northeast 4 5
Total 14 19
At least one interview with a researcher of the ORE core was completed per site; a content
analysis of documents and a digital ethnography on ADRC’s social media posts was completed.
Over sixty documents, and 1,073 social media posts were reviewed as a part of the digital
ethnography for this study. The following cross-case themes emerged from the data: Promotion
of studies and more money, more people, no problem; learn, know, be a part of the community;
and communication loop . The promotion of studies and more money, more people, no problem
refers to the different types of studies shared by the ADRC. These studies include clinical trials,
observational studies and non-pharmacological, social, behavioral and lifestyle interventions.
The theme, learn, know, be a part of the community refers to the importance of learning,
knowing and being a part of the community in relation to how these study opportunities are
being shared with minoritized racial and ethnic groups. Lastly, the communication loop theme
refers to communication practices available and incorporated at different ADRCs to share ADRD
study information. The following section provides a description of cross-case themes and codes
that emerged (Table 3). Novel themes that emerged but are unrelated to the study aims, include
education and resources ; opportunities for trustworthiness and deliberate resolutions , which will
only be broadly presented.
35
Table 3 Themes and codes that emerged from data
Research question Major theme Code category
Question 1: What kind of ADRD
study opportunities are being
shared with minoritized racial and
ethnic groups across ADRCs? Promotion of studies • Type of studies
• Means of promoting studies
More money, more
people, no problems • Paid ads and compensation
• Fundraising to find a cure
Question 2: How are study
opportunities being shared
minoritized racial and ethnic groups
across ADRCs?
Learn, know, be a part of
the community • Community collaboration
• Social disposition
• Cultural awareness
Question 3: Are there differences in
communication practices being
used by the ADRCs when
communicating ADRD studies with
minoritized racial and ethnic
groups? Communication loop • Language diversity
• Face-to-face
communication
Novel themes that emerged from data (unrelated to study aims)
• Education and resources
• Opportunities for trustworthiness
• Deliberate resolutions
Research Question 1: What type of ADRD study opportunities are being shared with
minoritized racial and ethnic groups across ADRCs in the United States?
36
There were two themes that transpired in the data in relation to the type of ADRD study
opportunities shared with racial and ethnic groups across ADRCs. The first was the promotio n of
studies that allowed for the examination in differences in the type of studies that were being
shared and the means by which certain types of studies are promoted. In addition, the theme,
more money, more people, no problems emerged. Within this theme, findings demonstrated
differences in how funding played a role in the type of study opportunities that were being
shared with minoritized racial and ethnic groups.
Promotion of studies
Participants interviewed for this study reflected and describ ed subtle or blatant
differences on what type of studies were presented to racial and ethnic groups in their
communities. Clinical trials, studies with pharmaceutical drugs, medical devices, and procedures
aimed to target ADRD disease progression or disease symptoms were not commonly shared
during community outreach events for racial and ethnic groups.
Type of studies
Interviewees described their hesitancy to promote clinical trials in racial and ethnic
communities, that were unfamiliar with research. In l ieu, observational or non -pharmacological,
social, behavioral and lifestyle interventions were more frequently shared with racial and ethnic
communities. A participant explains,
“I think that our observational trials are shared a lot more. That's because we do recruit
a lot more people within them. [And] these are a lot less intimidating to go out into the
community and ask people to participate [in]. We're not asking them to test any kind of
37
drug or experimental thing on them like in clinical trials. I think that we are maybe a little
bit more hesitant to do so. I think it's also like going back to the health literacy thing-I
think that I don't know if we do a great job of advertising our clinical trials. I think it's a
little bit more medically an d like scientific, based in our literature than the observational
trials. Like information and flyers, are - I think- part of that is because we have a bigger
push for diversity recruitment in our observational trials.”
Observational studies and other non -pharmacological, social, behavioral and lifestyle
interventions that may require surveys, imaging studies and assessments that often focus on
exercise, diet, caregiving, and other forms of social engagement are more aptly promoted to
racial and ethnic groups that the ADRC do have an established relationship with. Clinical trials in
comparison are considered to be invasive and inappropriate to ask persons you do not have a
developed relationship with to participate in. A research coordinator explains how participants
for clinical trials are usually recruited,
“…We reach out to people who are already in our observational trials, and we usually
will reach out to them with a letter or an email. You know - it's somebody we know, we
already have a relationship with. Depending on what the clinical trial i s, if it’s small
enough, maybe we make phone calls… It is a big ask to ask someone who doesn't know
us at all to trust us if we're talking, you know LPs [lumbar punctures], or you know, doing
PET scans and MRIs I mean, that's a lot to ask somebody who doesn't know me…”
Means of promoting studies
38
In addition to references made of the medical procedures required for clinical trials, and the
“scientific” nature of these studies, par ticipants also emphasized the need for a medical
provider to share these study opportunities and determine if participants are eligible to
participate.
“If you're going to be a part of a clinical trial study, you have to be referred by a doctor.
You have to have a connection with a medical provider who can provide the medical
information and collaborate with them on the drug trial. That's not something you're
going to do just coming up off the street.”
Analysis of documents corroborated these findings. Co mmunity presentations
specifically, often included invitations for observational and other non-pharmacological, social,
behavioral and lifestyle interventions , not clinical trials.
Figure 1
Slide from a PowerPoint presentation
39
Note: Example of observational and non -pharmacological, social, behavioral and lifestyle
interventions being promoted. From research participant [PowerPoint slide image], by personal
communication , 2023. Reprinted with permission.
Additional documents reviewed, however did provide a variety of available flyers, and
brochures promoting clinical studies. Some flyers differentiating between observational studies,
and clinical procedures required for studies and others did not (Figure 2).
Figure 2
Flyer promoting ADRD research studies
Note: Example of Flyer that does not differentiate between types of studies. From research
participant [ flyer image], by personal communication, 2023. Reprinted with permission.
Social media posts however, almost exclusively promoted clinical trials across all cases. Some
posts included compensation details and explained detailed requirements, while others broa dly
referred to medical information and biomarkers that would be collected as part of the study. In
contrast to the type of studies that were most frequently shared via community presentations,
clinical trials were most commonly promoted via social media.
40
Figure 3
Clinical study advertised on social media
Note: Example of clinical study posted on social media. From Facebook by Cleveland Alzheimer’s
Disease Research Center, 2022 (https://www.facebook.com/CleveADRC ). In the public domain.
More money, more people, no problems
This theme emerged as references to increased financial support would be nefit the
promotion of ADRD studies and ADRD research. Interview participants mentioned
advertisement opportunities they would like to have, or they paid for in the past to promote
certain types of ADRD studies. Participants explained how more funds would provide more
advertisement for studies and also allow them to hire and compensate staff needed for
outreach and engagement efforts. A participant interviewed explains,
“I think we’ve done advertisement for a year for one of the clinical trials. So we've d one
things like that. We typically-that's typically only for clinical trials because they have the
money to pay for it, and we've done radio ads, for clinical trials too. Well, we actually did
it for an epi[demiology] study too. So, we've done radio as well for clinical trials, and for
epidemiological studies, too… So if we had funds to be able to really advertise. That
41
would make a big difference. If we have funds to pay our speakers. We have a shoestring
budget, but we're able to do a lot, even with the shoestring budget.”
A participant also mentioned how a larger budget would provide compensation for
community members that outreach and engage on behalf of the center and share information
about ADRD with others. She states,
“We're educating community mem bers [about] the ADRC, so that we can call on them
when there are days that we can't do presentations. So that they can go out - or if there's
a resource event that we can't go to, that, maybe the ambassadors will go to. We’ll pay
them a small stipend and then they're going to be able to go to different places…”
Other compensation tactics used by ADRCs to promote research studies, with minoritized racial
and ethnic groups, included a referral program by a center. The document below demonstrates
what kind of ADRD studies at this site are being shared, how they are being promoted and how
access to larger budgets may provide greater opportunities to potential participants.
Figure 4
Refer a friend flyer in Spanish
42
Note: Example of a Flyer in Spanish, “Receive $50 for each friend you recommend to the ADRC
that completes an evaluation”. From research participant [flyer image], by personal
communication, 2023. Reprinted with permission.
In contrast, a component of promoting ADRD studi es, ADRD research and the ADRC on social
media emphasized the importance of fundraising to “find a cure” and lead innovative efforts
through research. Social media posts highlighted invitations to donate and give, on Giving
Tuesday, for fundraising galas, fundraising golf tournaments and events alike. These invitations
to contribute financially often did not specify how this would advance ADRD research
opportunities, but they were frequently being shared and promoted via social media.
Community fundraising walks were another commonly shared type of event, frequently
promoted as opportunities to advance ADRD research. Participation in these type of community
fundraising walks requires donations in order to participate in the event.
43
Figure 5
Social media post, fundraising
Note: Example of a fundraising opportunity posted on social media. From Facebook by UCI
Mind, 2022 (https://www.facebook.com/UCIrvineMIND/ ). In the public domain.
Figure 6
Social media post, fundraising walk
Note: Example of a fundraising opportunity posted on social media. From Facebook by Johns
Hopkins Memory and Aging, 2022 (https://www.facebook.com/jhmemoryandaging ). In the
public domain.
These type of community efforts are often led by the centers and promoted as an opportunity
to advance research, end Alzheimer’s Disease, or find a cure. This theme of funding tied to
opportunities available to engage with minoritized racial and ethnic communities were
presented in a distinct manner by research personnel interviews and documents comp ared to
44
social media posts. The need for larger budgets and hiring staff were presented as necessary to
expand on ADRD education, engagement events, and the promotion of ADRD studies to racial
and ethnic groups. In contrast, the need for monetary donations promoted on social media did
not refer to the expansion of ADRD education, engagement events, or the promotion of ADRD
studies, rather it was presented as necessary for the advancement of research studies.
Research Question 2: How are ADRD study opportunities being shared with minoritized
racial and ethnic groups?
Notable differences in how ADRD study opportunities are shared with racial and ethnic groups
across ADRCs transpired in the data. The theme: learn, know, be, a part of the community refers
to opportunities to not only learn, but understand community nuances, and ultimately become
a part of the community. To be a part of the community requires an interconnectedness and
application of the learned community values. This includes collaborations within the
community, possessing a social disposition and embracing cultural awareness. Th ese findings
from the data will be presented further in this section.
Learn, know, be a part of the community
This theme refers to opportunities for ADRCs to observe, learn, and understand
preferred methods used by groups in diverse communities to communicate. The state of being
and learning from minoritized racial and ethnic groups is a best practice that many ADRC
personnel endorsed during the interviews. This practice allows for opportunities to genuinely
understand community concerns, community values, community barriers and what is truly
relevant to the community. This includes opportunities to comprehend what the preferred
45
methods of interacting and learning by minoritized racial and ethnic communities are. A
participant explains the importance of this,
“Well, I think -I mean, we need to know from our audience themselves. You know. What
is it. What are the what are- the topics that they would find interesting and most helpful
to them, And what's the format that would be most useful to them as well, and also
recognizing that it may not be monolithic within a culture. So some people may like more
of a personal touch. Some people may like more of a lecture. You know you could -
obviously can have different interest in terms of topics as well. But I think this is where
you know, speaking with our participants or potential participants in the community, to
learn from them about what topics and what format that's really essential to make sure
it's relevant.”
Although there was consensus across interview participants of the importance of learning from
communities there were limited examples of different methods to communicate with diverse
communities. For example, community presentations, lectures and webinars were referred to
the most common way to share information in the community. In the following section,
community collaboration , social disposition and cultural awareness will be reviewed in the
context of learning, knowing and being a part of a community ADRCs would like to engage with.
Community collaboration
References to community partners were frequently cited throughout the interviews and
the number, and type of individual stakeholders and organizations regarded as a community
partner varied. Some ADRCs described the importance of collaborating with the community,
46
they explained the importance of having mutual regard for events, meetings, and gatherings
organized by their community partners. This included community events that may not be
pertinent to ADRD and ADRD research. A participant describes the importance of having a
reciprocal relationship with community partners:
“We want them to know we're in it for the long haul that it's a two-way relationship, and
when a church is having a health fair or they're planning a community garden, and it's
one of the churches that we have a relationship with, I rally my troops, and we come
over, and we're giving back. We're helping whether it's planting or doing whatever they
want. These relationships need to be two-way… it's a partnership because we are not
coming in to air quote, ‘save the day’ or ‘save them’. We are coming in to offer a
partnership, a respectful partnership. To bring in res ources in an area in which this group
or groups may not have ready access to this information.”
Community desires to learn about certain ADRD and aging related topics were often readily
addressed and welcomed. Fewer ADRCs however addressed needs apart from ADRD education
and ADRC study support and resources. Although some initiatives were taken by ADRCs that
integrated community concerns, needs, and advocated on their behalf for social issues
unrelated to ADRD, examples were difficult to come by. These type of community collaborations
unrelated to ADRD were not widely shared across ADRC social media accounts. In addition,
details about upcoming community events with community partners were not regularly shared
on social media before the event would take place.
47
Figure 7
Social media post, community collaboration
Note: Example of a community collaboration , post on social media. From Facebook by Rush
Alzheimer’s Disease Center, 2022 (https://www.facebook.com/RushAlzheimersDiseaseCenter ).
In the public domain.
Community collaborations that were most commonly shared on social media by ADRCs, were
ADRD events with established organizations and proponents of Alzheimer’s Disease research,
these included councils on brain health, other ADRCs, hospitals and foundations. This was a
stark contrast, to the type of collaborations presented on d ocuments. Community
collaborations and events shared on flyers for example regularly, though not exclusively,
included local sites and organizations such as libraries, churches, senior housing facilities, and
local social service organizations.
48
Figure 8
Flyer advertising a presentation in the community
Note: Flyer advertising a presentation in the community on, “7 ways to keep your brain
healthy”. From research participant [flyer image], by personal communication, 2023. Reprinted
with permission.
Social disposition
An important component of learning, knowing and being a part of a community is an
understanding of social nuances that can be interpreted appropriately. This includes social
circumstances in which research representatives of ADRCs are able to demonstrate kindness,
selflessness, sincerity, care, fun and personal aspects about themselves with commu nity
members. A recognition that there is inherent value of people in the community that you are
engaging with and relatability. This awareness and attention to these details are shared by an
interviewee,
“For example, when we do a community presentation i t's a subtle point, but if you come
in with coffee with, you know, food. Make it a welcoming environment. You're going to
build trust with participants as opposed to just going there and attending a lecture. You
49
know you you're in- You're out. That's not- the that's not a good practice. When you
engage Latinos -with Latinos there's a dance. You have to get to know people -if you can,
on a personal level, but you know over coffee, or, you know, have some food available.
Something that you know would be welcoming -the that's one thing.”
These type of opportunities with some interviewees were discussed as important, but typically
done before and after meetings. Informal introductions and conversations would create
moments for more meaningful relationships with each other, by being a part of the community.
Another example of how social disposition was demonstrated on behalf of the ADRC was the
incorporation of events such as “walk with a doc” by an ADRC, where medical doctors would
engage in walking with people in their community.
Figure 9
Flyer of an event in the community
Note: Flyer advertising an event in the community, “Walk with a doc”. From research participant
[flyer image], by personal communication, 2023. Reprinted with permission.
50
Social disposition displayed in the majority of posts shared on social media accounts
were related to an ADRD or an ADRC event promoted as an opportunity to have an enjoyable
time. Demonstrations of relatability to the community at large also included references to
November as National Alzheimer’s Awareness and Caregiver Support month and cont emporary
references to ADRD on television shows and featuring celebrities as spokespersons.
Figure 10
Social media post, television show
Note: Example of a social media post referencing a television show, “This Is Us”. From Facebook
by Penn Memory Center, 2022 (https://www.facebook.com/PennMemoryCenter ). In the public
domain.
Cultural awareness
Affirming cultural diversity in communities is important, including but not limited to
cultural traditions, holidays, practices, beliefs, customs, and cultural values. Some interviewees
disclosed the importance of having cultural diversity and shared examples of how culture was
incorporated in events hosted by the ADRCs. Variation across sites was evident in what
culturally relevant meant and how it was implemented in events they hosted for racial and
ethnic groups. Cultural awareness and appropriateness ranged from collaborative planning of
51
events, incorporations of customs, practices, music, dance, food and dress to minimal to no
changes incorporated when engaging with racial and ethnic groups. An ORE core co-leader
describes the difficulty in planning a culturally relevant program for the LGBTQ+ community in
her state:
“With the LGBTQI+ community, well we are in a very conservative area, and many of our
older adults are still in the closet, so to say… what we did recently was to have a book
night in one of the bookstores. We put LGBTQI+ books there and invited, you know
everyone to come dressed as what you think somebody from the LGBTQI community
looks like. So, we could see right, people like you and me that do not look any different,
to people that look very different and are very proud of being in drag for example. You
know -that there is no certain way to look-to show your sexual identity…So we
highlighted some of the writers that have contributed, being open [and] being [a] part of
that community. And you know, we had tacos, pan dulce, and cafe con leche. And when
we told them, you know, our LGBTQI+ community has twice the risk of developing
dementia. You know, they were very curious. So we talked about higher risk and
suffering, and not being able to show yourself and how tha t creates chronic stress. So we
really tried to tie it[with] what we know about Alzheimer’s research, and so forth, and
prevention and with the reality of the people.”
These types of events that incorporated cultural aspects of diverse communities took pl ace in
the local community and not at an ADRC, university or hospital setting. Few participants
interviewed referred to the importance of cultural values and how that should be considered in
52
how ADRD events and study opportunities are shared. An example of a cultural value of family,
recognized by a principal investigator that works with the Latinx community, explains,
“I think what’s happening here is that the adult child is usually the one that make that
helps make the decisions around enrolling in the studies because there is, there's a
familism dynamic within the Hispanic and you also see that in the Asian culture as well.
There's a Familism kind of dynamic there that needs to be considered. And with the non-
Hispanic Whites it might be different. It migh t be that you know it’s more individualistic,
it might just be- You know, the one person makes the decision to enroll and brings the
spousal partner on board, because the spouse is really just the part of the family, and
kids are gone, and they're no longer part of that family unit. So these kind of cultural
factors are exactly what we need to understand when we consider trials and involvement
in the study, because the study partners are a requirement for enrolling in in these trials.”
The cultural value of familism, for example, within different communities was not widely
recognized or included as part of ADRC events that often promoted ADRC studies. Inclusion of
family as a part of ADRC studies were rarely included, and the use of wording such as “study
partners” and “caregivers” were more commonly used on social media posts. In addition,
general endorsement of cultural awareness and appropriateness prompted changes to
community presentations to include images of visibly diverse individuals. This also exten ded to
include images of racially ambiguous people on flyers, brochures, and other documents.
Similarly, cultural diversity was limited across social media posts to images of diverse individuals
and posts of ADRC involvement in a “cultural event”. The scope of cultural awareness and
appropriateness displayed on social media was also restricted to acknowledgement and
53
celebration of United States holidays, such as Thanksgiving, Christmas, New Year’s Day,
Veteran’s Day and Fourth of July. Other cultural holidays and practices displaying alternative
cultural values were non-existent across cases analyzed.
Figure 11
Document with images of diverse people
Note: Document with images of diverse people, “Join the search for a solution ”. From research
participant [ brochure image], by personal communication, 2023. Reprinted with permission.
Research Question 3: Are there differences in the type of communication strategies
that are being used by the ADRCs with minoritized racial and ethnic groups?
As a part of this study, possible differences in the type of communication strategies that were
being used with minoritized racial and ethnic was examined. The theme, communication loop
transpired which refers to the input and output or the sending and receiving of information.
Within this theme, limited language diversity and the importance of face-to-face
communication were identified. The importance of language diversity and face-to-face
54
communication and their role of exchanging and sharing info rmation , in particular about ADRD
studies, will be discussed further.
Communication loop
This theme refers to the ability to clearly share and receive information in a way that is
understood by the recipient and sender of information. Recipients of information
should feel encouraged to listen but also to express their opinions and ask questi ons to ensure
a clear understanding of benefits, purpose, expectations, constrictions, and requirements
related to what is being shared. Within the theme communication loop, the following codes
were identified: Language diversity and face -to-face communication. These will be discussed
further as potential facilitators or inhibitors of communication practices between ADRCs and
minoritized racial and ethnic community members at large as potential research participants.
Language diversity
There was minimal access to ADRD information, ADRC and ADRC study materials in
languages other than English. There were limited translations for some study flyers, brochures,
assessments, and consent forms for many of the ADRC studies. In addition to limited materials
in diff erent languages, there was also limited research staff available to communicate with non -
English speakers in the community. Despite the majority of ADRCs indicating efforts to increase
the number of non-English speakers into ADRC studies many did not have a formidable number
of materials available in different languages. A participant shares,
55
“So right now, unfortunately, that's one of the of the hurdles that we have. The only
thing that we have translated right now are our [study] flyers…and then the Pow erPoint
[presentation] that we do [and] the lectures by speakers, those are translated.”
Although the majority of the ADRC representatives shared their intention to move towards
translating documents and/or hiring bilingual staff, no representative indicat ed having an
adequate amount of ADRD study materials available or bilingual staff. ADRC personnel that
indicated having some ADRD study materials available in different languages, only indicated
having information available in the Spanish language. Despite awareness and recognition of
other spoken languages within their community, Spanish was the only language materials were
currently available in. A participant shares languages current materials are available in,
“…We've had some discussions about having Spanish language stuff on our website just
like informational stuff. But I don't think I don't think we've done anything yet. Let me see
if I can find it on the website the other - So the second most common language in this
area after English is Spanish, but the next one after that is Hmong and I pretty certain we
don't have anything in in Hmong.”
Limited availability of ADRD study materials not only restricted information to non -English
speakers, but also inhibited some research coordinators from providing ADRD study related
information at all. A participant discloses,
“There is limited information in Spanish, but the issue here is, and I’m just being fully
transparent with you, where we are behind the eight ball is, we do not have any Spanish-
56
speaking study coordinators. So even though we may have materials in Spanish, I don't
use them, because if someone were to express an interest. I could not serve them.”
Social media posts by ADRCs in different languages other than Spanish were nonexistent. Of the
posts analyzed, only two ADRCs had posts in Spanish and of those two, only one ADRC posted
more than once in Spanish on their social media account.
Figure 12
Social media post in Spanish
Note: Example of a social media post in Spanish, “10 tips for choosing healthy foods as you age”.
From Facebook by Rush Alzheimer’s Disease Center, 2022
(https://www.facebook.com/RushAlzheimersDiseaseCenter ). In the public domain.
In addition, the self -reported questionnaire asked of each research personnel that was
interviewed was assessed (Appendix B). Only six ADRC research personnel indicated engaging
with “speakers of another language other than English” (Table 4). The American Community
Survey question, on “language other than English spoken at home” was extracted for the city in
which each ADRC is located in (US Census Bureau, 2021). Each ADRC site location has not been
specified in order to protect their anonymity. The following data demonstrates each ADRC site
57
that indicated engaging with speakers other than English on the questionnaire . The table below
also shows the percent of people in the city each ADRC is located in, that speak a language
other than English at home, according to US Census (US Census Bureau, 2021).
Table 4 List of ADRC self-reported engagement with non-English speakers and ACS data for each
ADRC city included in this study
*Indicates sites that had social media posts in a different language
Site
identifier
Self-reported engagement with
"speakers of another language other
than English"
ACS "Language Other than
English Spoken at Home"
001* 22.7%
002* X 47.8%
003 15.8%
004 17.3%
005 X 20.3%
006 X 10.6%
007 8.9%
008 X 22.1%
009 10.2%
010 9.4%
011 X 12.3%
012 49.1%
013 X 35.0%
014 13.8%
Face-to-face communication
Face-to-face interactions with people, allow for observations of facial expressions, body
gestures, nonverbal cues and body language that may otherwise not be noticed. In recent years
as a result of the pandemic, the use of video has allowed for virtual face-to-face communication
in real-time and an uptick in the use of video conferences and video recordings by ADRCs. This is
58
important to note as participants described changes to community outreach events taking place
in-person and online to date. A partici pant explains,
“We're still mainly, I would say - community outreach events, many of them are back, or
more are going back to in-person, but a lot of our… group meetings are still online. I
think a lot I don't know how it is in other centers, but some of our teams work hybrid
schedules.”
Personal interactions with community members and word of mouth were endorsed by all
interview participants, as being a premier means of communication with minoritized racial and
ethnic groups. Disclosure of personal stories and experiences including recommendations and
shared warnings were referred to as important when engaging with racial and ethnic groups.
Very few research personnel however, embraced personal disclosure of their own personal
experiences with community members. A research coordinator recalled her experience as a
caregiver and shared the importance of her former role in the work that she currently does.
Another participant reflected,
“That's actually part of the training that we do with our staff … that's a big issue actually
with the staff. [We tell them] to use your life story. It doesn't need to be neutral. There is
no such thing as a neutral life. You know we all come with different worlds in our minds,
so we say, use your experience, your life, your values...”
These type of personal disclosures by community members or research participants were
commonly shared by ADRCs and included as part of ADRC events that included panels. Personal
stories of ADRC research personnel however, were rare. Research recognition, awards, and
59
grants received were more commonly presented on social media posts as it pertained to
research affiliates stories in relation to ADRD and the ADRC.
Figure 13
Social media post, participant story
Note: Social media post of participant sharing their story . From Facebook by Rush Alzheimer’s
Disease Center, 2022 (https://www.facebook.com/RushAlzheimersDiseaseCenter ). In the public
domain.
Additional Themes
Additional but notable themes, outside of the scope of the research questions of this
study include: education and resources; opportunities for trustworthiness; and deliberate
resolutions. Differences in the type of educational information that was being shared with
minoritized racial and ethnic minorities transpired as well as the kind of resources that were
available and being provided through ADRCs. Opportunities for trustworthiness refers to clear
but respectful boundaries between ADRC research personnel and the community. This includes
an emphasis on voluntary participation in ADRC research studies, and “keeping your word”.
Interviews with participants indicated the importance of deliberate resolutions , the ability to
talk about sensitive issues as they arise without being defensive. This includes taking
60
responsibility for mistakes made and addressing past events of discrimination and maltreatment
in research. A brief of overview of education and resources will be presented, other themes that
transpired will not be reviewed in greater detail.
Education and resources
Notable differences in the type of information that was being shared and emphasized
with racial and ethnic groups transpired. Interviewees suggested that many of the presentations
done in the community for racial and ethnic groups emphasized topics on health literacy related
to the prevention of ADRD. In addition, a smaller number also emphasized the importance of
educating c ommunities on what research is and the process of participating in research studies.
These types of presentations were often followed by invitations to learn more about the ADRC
or invitations to participate in ADRC studies. In contrast, conferences, webin ars, and lectures
presented innovations in ADRD research or the progress of ADRD research studies. Some of
these also included invitations to participate in ADRD studies. This contrast can especially be
seen in documents and flyers for community -based events compared to lectures (Figure 14).
Figure 14
Flyer of a community event
61
Note: Flyer of an educational event , “Brain health and aging in our community”. From research
participant [ flyer image], by personal communication, 2023. Reprinted with permission.
Available resources by the ADRC at these events were commonly advertised. Resources
ranged from memory assessments to information about caregiving support groups. Some
community-based presentations also provided community members with the opportunity to
speak to specialists such as neuropsychologists post-presentations. The majority of interviewees
referred to sharing ADRC resources available with community members and of resources
available with larger well-established, national ADRD organizations. National ADRD
organizations were most commonly cited and shared via social media as an ADRD resource.
Educational posts and resources via social media across cases pertained to tips related to
healthy eating, exercise, caregiving. Very few cases shared resources such of social services
available within each unique community addressing ADRD issues and concerns. Even fewer
resources specific to each community, unrelated to ADRD were shared though some were
available (Figure 15).
62
Figure 15
Social media post, local resources
Note: Example of a social media post of local resources unrelated to ADRD. From Facebook by
Rush Alzheimer’s Disease Center, 2022
(https://www.facebook.com/RushAlzheimersDiseaseCenter ). In the public domain.
Opportunities for trustworthiness
Respectful and clear boundaries between ADRC research personnel and the community
were emphasized throughout the interviews with personnel. Research personnel stressed the
importance of research study opportunities being voluntary. Many acknowledged the
importance of being honest, clear and respect for boundaries in the development of
relationships with community members. This includes but was not limited to pressuring people
to participate in research studies which was deemed unacceptable. Additionally, opportunities
for trustworthiness were demonstrated throughout documents and social media posts
advertising participation in ADRC research studies . The use of the words voluntary or volunteer
and detailed information about research study eligibility criteria, study requirements and
63
remuneration for participation that would coincide with participants’ experiences in research
studies.
Deliberate resolutions
Conversations related to the discrimination and maltreatment of minoritized racial and
ethnic groups that were a part of research studies in the past, were determined to be very
important by research personnel. In addition, research personnel focused on the ability to talk
about sensitive issues as they arise without being defensive. This includes taking an approach to
actively listening to community members’ concerns and being able to take responsibility for
mistakes and addressing past events of discrimination and maltreatment in research. Examples
of deliberate resolutions by research personnel were limited, however social media posts and
documents were even less available.
64
Chapter Five: Discussion and Implications
Minoritized racial and ethnic groups are underrepresented in ADRD research studies.
Barriers to their marginal participation are frequently cited; limited access to transportation,
time, information about research, cultural beliefs and values, and especial ly lack of trust
(Dilworth-Anderson et al., 2005). This multiple -case study of 14 ADRCs across the United States
aimed to examine how authentic, effective, and transparent communication practices of these
centers are currently being used and can be used to develop trust. The following questions
guided this research study:
1. What type of ADRD study opportunities are being shared with minoritized racial and
ethnic groups across ADRCs in the United States?
2. How ADRD study opportunitie s being shared with minoritized racial and ethnic groups ?
3. Are there any differences in the type of communication strategies that are being used by
the ADRCs with minoritized racial and ethnic groups ?
This study contributed to the current state of literature, as it relates to mistrust among
minoritized racial and ethnic groups, considered to be a dominant barrier to their participation
in ADRD research. Using the authentic, effective, and transparent communication practices, a
part of the TICARP framework, differences in the types of ADRD study opportunities being
shared with minoritized racial and ethnic groups were evident. In addition, findings indicate
there are practices that can improve ways ADRD studies are shared with minoritized racial and
ethnic groups; and differences in communication practices that should be considered when
sharing ADRD studies with minoritized racial and ethnic groups.
65
Shared ADRD research study opportunities
Using the TICARP framework, authentic, effective, and transparent co mmunication
practices used across cases suggest that observational studies and non -pharmacological, social
behavioral and lifestyle interventions are studies that are most widely shared with minoritized
racial and ethnic groups during community presentatio ns compared to clinical trials.
Intervention studies requiring surveys, diagnostic assessments, imaging studies, and other non -
pharmacological interventions were considered to be less invasive and more appropriate to
share with communities of underrepresen ted racial and ethnic groups across cases. These
types of studies were considered to be suitable introductions to the research process and
research studies in general. Findings also suggest awareness of medical stipulations required to
be a part of clinical trials. References to stringent eligibility criteria that deemed participants
ineligible if they were diagnosed with common health disorders and taking certain medications
was noted. These requirements were referred to as inhibiting factors to minoritiz ed racial and
ethnic groups’ participation in these studies and is in alignment with past findings (Grill &
Galvin, 2014). In addition , medical diagnoses, the need to be monitored by a medical doctor,
and access to medical care as part of these clinical trials, were described as explanations for
limited promotion of clinical trials during presentations in the community. The promotion of
clinical trials was considered to be unfeasible outside of a clinical setting for this reason,
especially if medical doctors would be unavailable to share specific details about the trial in -
person during presentations in the community. Many described the promotion of clinical trials
exclusively to research participants that had participated in prior research studies. Others also
shared how ADRD clinical study participants were selectively invited by medical doctors,
66
provided the eligibility criteria, in a clinical setting such as a partner hospital. Findings from this
study indicate limited sharing of clinical trials in community settings, indicate a concern for the
relationship between minoritized racial and ethnic groups in the community and researchers
and/or the withholding of information because community settings are considered an atypical
place for promoting these types of studies. Promotion of clinical trials however were most
shared on social media accounts across cases, not observational or non -pharmacological, social
behavioral and lifestyle intervention studies. Despite limited promotion of clinical trials in
community-based presentations in the community, clinical trials were posted on social media
the most. The data demonstrates a stark contrast as to what kind of ADRD opportunities are
being shared with minoritized racial and ethnic groups during these types of outreach and
engagement events. This is important to note, because withholding opportunities to participate
in clinical studies may implicitly perpetuate disparities in ADRD research.
Findings also suggest differences in how involvement in ADRD research means and how
that is presented to minoritized racial and ethnic groups and how that is presented to the
broader public on social media. Across cases, refences to larger budgets were considered as an
opportunity to outreach and engage with minoritized racial and ethnic g roups and share
information about ADRD and ADRD studies. Promotion of ADRD studies, ADRD research and the
ADRC on social media emphasized the importance of fundraising to find a cure through
research. Social media posts highlighted invitations to donate vi a fundraising galas, fundraising
golf tournaments and community walks for example. These types of invitations may implicitly
deter certain people from being able to partake in “advancing research” efforts or being a part
of ADRD research more broadly. The data suggests differences in the kind of ADRD
67
opportunities being shared with minoritized racial and ethnic groups. More observational and
non-pharmacological, social behavioral and lifestyle intervention studies are being shared
across cases. In addition, financial support for ADRD research is exclusively shared on social
media and not a part of community or targeted events for racial and ethnic groups. This is
extremely important to consider as the literature suggests that underrepresented racial and
ethnic groups, are equally as likely to participate in research studies compared to non -Hispanic
White participants if presented with the opportunity (Dilworth -Anderson et al., 2005; Oh et al.,
2015; Wendler et al., 2005).
How to share ADRD study opportunitie s
Findings suggest that there was great approval of learning, knowing, and being a part of
the community. This is particularly important in understanding preferred methods of
communicating, interacting, and learning by minoritized racial and ethnic communities.
However, the data demonstrates few ADRCs identified and incorporated innov ative methods of
engagement and learning identified by minoritized racial and ethnic groups in their community.
Community collaboration was typically described as, ADRC selected methods of engagement
and their request it be reviewed by selected community members, such as a community
advisory board. Collaborations with community partners portrayed online were primarily with
large, established ADRD organizations and few posts included community partnerships with
local organizations that were advertised in doc uments shared with minoritized racial and ethnic
groups across cases. In addition, community initiatives, needs and concerns were rarely
addressed by ADRCs. Social disposition , or demonstrations of kindness, fun or relatability with
the community did not typically include opportunities unrelated to ADRD. The importance of
68
diversity and cultural awareness and appropriateness was supported by interviewees across
ADRCs. However, inclusion of cultural customs, holidays, practices, and cultural values were
infrequently incorporated across cases. Cases that endorsed the importance of learning,
knowing, and being a part of the community, also had a social disposition and demonstrated
support for community events, concerns and needs, even those unrelated to ADRD. In addition,
these cases were more keenly aware of cultural customs, traditions, and values. This is
particularly important as ADRCs that genuinely want to learn, know and be a part of a
community may need to collaborate with local community partners, demonstrate a more social
disposition a nd incorporate culturally relevant details when sharing ADRC studies with racial and
ethnic groups. Cultural targeting may require more than simple culturally relevant statements
and visibly diverse images of people on materials to increase participation of minoritized racial
and ethnic groups (Nicholson et al., 2015). As demonstrated by the data, incorporation of
cultural customs, values, and preferred methods of learning were very limited across cases. A
rather more intentional and collaborative effort with the cultural values, needs and concerns of
the community may be needed to develop trust (Hussain-Gambles et al., 2004; Levkoff, 2000;
Levkoff & Sanchez, 2003; McLean & Campbell, 2003; Sixsmith et al., 2003) . This is especially
important if ADRCs want to be a part of the community they are trying to reach, and not be
considered as outsiders or irrelevant to the needs of minoritized racial and ethnic groups.
Differences in communication strategies
Data from this study suggests that there is a clear impediment of information being
shared by ADRCs and certain racial and ethnic groups not receiving this information. Limited
information about ADRC studies in a language other than English or Spanish, demonstrates
69
differences in communication practices being used. The absence of ADRD materials in different
languages and bilingual staff, demonstrates a conspicuous barrier to communication between
the ADRC and non-English speakers. This is important to recognize as lack of access to
information about research opportunities have been demonstrated to be a reason for margi nal
participation by non -English speakers of underrepresented racial and ethnic groups (Eakin et al.,
2006; George et al., 2014). Personal interactions with community mem bers and word of mouth
were endorsed by all interview participants, as being a premier means of communication with
minoritized racial and ethnic groups. Disclosure of personal stories and experiences including
recommendations and shared warnings were refer red to as important when engaging with
racial and ethnic groups. This is consistent with other studies, that recognize the importance
social capital and the development of social relationships in engaging with minoritized racial
and ethnic groups (McLean & Campbell, 2003; Sixsmith et al., 2003). Findings from previous
studies that have provided culturally and linguistically appropriate Spanish study materials, have
also shown high rates of recruitment and greater rates of retention participation of Spanish
speakers compared to English speakers (Eakin et al., 2006). Unavailable information about ADRC
studies and personnel able to effectively communicate with non -English speakers about ADRD
studies, may very well be contributing to the development of trust between ADRCs and
participation in studies.
Themes that also emerged as part of this study include: education and resources;
opportunities for trustworthiness; and deliberate resolutions . Educational information related to
ADRD, resources available, and resources shared with minoritized racial and ethnic minorities
were found to be limited in this study. This is in agreement with other studies that have found
70
limited ADRD health literacy among minoritized racial and ethnic groups (Ayalon & Areán,
2004). The importance of respecting boundaries between ADRC research personnel and
potential participants , specifically minoritized racial and ethnic groups, also transpired.
Opportunitie s for trustworthiness, emphasized these boundaries and participation in studies as
a voluntary act. The importance of communicating appreciation and respect when engaging
with minoritized racial and ethnic groups has also been noted in other studies (Blanchard &
Lurie, 2004). In addition, the deliberate resolutions theme emerged, which emphasized
accountability for mistakes or offensive comments made by research personnel. This theme also
highlights the importance of being willing to address when they are at fault, and not shy away
from experiences of discrimination and maltreatment of minoritized racial and ethnic groups in
research. These additional themes that transpired are opportunities for further examination and
future studies to develop upon.
Limitations
The current state of authentic, effective, and transparent communication practices being
implemented by ADRCs to develop trust in communities, required a qualitative multiple case
study. This comprehensive approach to data collection and analysis was adequate and
necessary as the contemporary phenomenon of the development of trust between ADRCs and
minoritized racial and ethnic groups was being expressed in a real -world context (Rowley, 2002;
Yin, 1999). This study however did have its limitations. Although this study did meet the
minimum number of participants required for a cross -case qualitative analysis it was still limited
(Creswell & Creswell, 2017; Yin, 2018). A total of 17 semi-structured interviews were completed
as part of this study using purposive sampling. Sources indicate probable saturation at 12
71
interviews, this study is also limited to a total of 14 cases represented in this study (Creswell &
Creswell, 2017; Yin, 2018). Of the 33 national ADRCs, less than half were represented in this
study. Of the 19 national ADRCs that were not included in this study, 8 are in the West region of
the United States, 5 of those in California. This is notable because California is one of the most
racially, ethnically, and linguistically diverse states in the nation (US Census Bureau, 2020).
Furthermore, interviews were exclusively with research personnel representative of the ORE
core, responsible for the outreach, recruitment, and engagement with community members
and did not include outreach activities or strategies completed by other ADRC cores, such as the
clinical core, and research education component core . These findings therefore may not be
generalizable to all ADRCs or other cores within the ADRCs represented in this study.
Future research and recommendations
This multiple -case study of ADRCs across the United States examined how authentic,
effective, and transparent communication practices of these centers are currently being
implemented and how they can be further developed to create and maintain trust. Through this
study, differences in communicati ng study opportunities , particularly types of studies shared
with minoritized racial and ethnic groups were found. Future studies should consider ways in
which clinical trials can be shared with minoritized racial a nd ethnic groups. This includes but is
not limited to the promotion of clinical trials in community -based settings and the promotion of
all clinical trials, observational and non -pharmacological, social, behavioral and lifestyle
interventions on social media. Future studies should empirically examine clinical trials and their
primary recruitment strategies. In addition, genuine community collaborations and
incorporation of cultural customs and values in the promotion of ADRC studies, may impro ve
72
communication practices and trust between ADRCs and minoritized racial and ethnic groups.
Lastly, access to translated ADRD study materials, educational information, and bilingual staff
may improve communication practices with non -English speakers.
Conclusion
Mistrust is commonly cited as a reason for minimal inclusion of racial and ethnic groups’
participation in research (Resnick et al., 2015). Despite this and other barriers, findings indicate
that racial and ethnic minority groups are equally as likely to participate in research studies as
non-Hispanic White participants if they are presented with the opportunity (Dilworth-Anderson
et al., 2005; Oh et al., 2015; Wendler et al., 2005). The purpose of this study was to examine
what type of ADRD study opportunities are being shared with minoritized racial and eth nic
groups by ADRCs. This study found that observational and non -pharmacological, social,
behavioral and lifestyle interventions were being shared in a community-based setting more
commonly than clinical studies with minoritized racial and ethnic groups. Findings from this
study also demonstrated differences in how ADRD studies were being shared with minoritized
racial and ethnic groups. A genuine openness to learn, understand and be a part of the
community may be important in how to effectively communicate ADRD studies with minoritized
racial and ethnic groups. Community collaborations, and the incorporation of cultural customs
and values are ways ADRD studies presented to minoritized racial and ethnic groups may be
integral in the establishment and development trust and contribute to increased participation
of racial and ethnic groups’ participation in ADRD research studies (Dilworth-Anderson et al.,
2005). Lastly this study found differences in communication practices being used with
minoritized racial and ethnic groups. Findings revealed endorsement of in-person, face-to-face
73
communication, and the dominant use of ADRD study materials, consent forms, educational
information and re sources in the English language. Non-English ADRD materials were only
limited to Spanish across cases.
Barriers specifically within the context of communication practices being used by ADRCs
with minoritized racial and ethnic groups have been identified through this study. As a tenet of
social work, social justice requires equal access and opportunities to all individuals , including
opportunities to participate in ADRD research studies (Atteberry -Ash, 2022). This is necessary as
we actively move toward achieving health equity in Alzheimer's Disease and related dementias
research. The role of advocacy in social work is exemplified in understanding barriers to these
opportunities; the elimination of these barriers; and recognition of the potentially profound
benefit s to minoritized racial and ethnic groups . Facilitators and communication strategies
addressing these barriers among minoritized racial and ethnic groups are necessary to achieve
more generalizable ADRD study findings and ADRD health equity. These findings should be
considered in the development of future studies that intend to: 1) establish and develop trust
between ADRCs and minoritized racial and ethnic groups; 2) improve communication practices
between ADRCs and minoritized racial and ethnic groups; and 3) increase participation of
minoritized racial and ethnic groups in ADRD studies.
74
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Appendix A: Interview Guide Questions
Hello, thank you for agreeing to participate and for allowing me to record this interview.
As part of my dissertation project, I am completing a multiple case study. I will be conducting
interviews with research personnel like you, across multiple Alzheime r’s Disease Research
Centers. This work will allow us to better understand how to improve disparities of
underrepresented groups in Alzheimer’s Disease and Related Dementias (ADRD) research. If you
need clarification on any of the questions I ask, please l et me know. Do you have any questions
before we begin? [pause] Let us begin [hit record].
1. In your experience, how would you describe communication practices at the ADRC?
2. Is there a practice that works better when engaging with underrepresented racial an d ethnic
groups?
3. Of the practices used at your ADRC to communicate with underrepresented racial and ethnic
groups, are materials available in different languages?
4. How are practices to engage with underrepresented racial and ethnic groups decided on?
5. What makes a communication practice culturally relevant?
6. Can you give an example of successful event?
a. How do you measure success? Are there any indicators or metrics that you use?
b. What could make them better?
c. Can you give an example of an unsuccessful event?
7. How would you describe effective communication practices with community partners?
8. From your experience, are there differences in the type of research studies that are shared with
racial and ethnic groups?
9. Is there anything else you would like to share that you feel is important when sharing
information related to ADRC studies with underrepresented racial and ethnic groups?
91
10. Would you be willing and able to provide me with examples of documents that are used to
share information related to the A DRC or ADRC research studies with underrepresented racial
and ethnic groups in-person or online?
This includes documents used for:
a. Referral forms from community organizations, hospitals, clinics, or medical providers
b. Tabling at health fairs, community 10ks, 5ks, community gatherings
c. Health education presentations (i.e., brain health)
d. Self-enlisted participants (i.e., where people write their information to be contacted later)
e. Formal lectures by speakers on the latest ADRD research
f. Conferences or workshops on Alzheimer’s Disease and related dementias
g. Email solicitations
h. Study flyers
i. Post cards
j. Letters
k. Telephone calls “cold calls”, one-to-one solicitations over the phone
l. Newspaper ads
m. Billboard ads
n. Radio ads
o. Social media posts (e.g., Facebook, Instagram, YouTube, etc.)
Please note these documents will not have identifiable information linked to you or the ADRC
directly. Documents shared should be publicly accessible. Please refrain from sharing internal
documents, as they will not be reviewed. [pause] Thank you for your time.
92
Appendix B: Self-Report Questionnaire
Q1: Did you previously participate in an interview for the Recruitment Strategies in Alzheimer’s
Disease and Related Dementias Across the United States study (UP-21-01138) last spring, with
principal investigator, Beatrice Martinez?
Q1a: What is your gender identity?
b. Woman
c. Man
d. Non-binary/non-conforming
e. Other
Q1b: Are you of Latino or Hispanic origin or descent? (A person of Cuban, Mexican, Puerto
Rican, South or Central American, or other Spanish culture or origin, regardless of race)
Q1c: How would you describe your ethnicity?
f. Mexican
g. Central American
h. South American
i. Puerto Rican
j. Cuban
k. Other
Q1d: How would you describe your race? Check all that apply.
l. White or Caucasian (A person having origins in any of the original peoples of
Europe, the Middle East, or North Africa)
m. Black or African American (A person having origins in any of the Black racial
groups of Africa)
n. Asian or Asian-American (A person having origins in any of the original peoples of
the Far East, Southeast Asia, or the Indian subcontinent including, for example,
Cambodia, China, India, Japan, Korea, Malaysia, Pakistan, the Philippine Islands,
Thailand, and Vietnam)
o. American Indian/Alaska Native (A person having origins in any of the original
peoples of North, Central, or South America, and who maintains tribal affiliations
or community attachment)
p. Native Hawaiian or Other Pacific Islander (A person having origins in any of the
original peoples of Hawaii, Guam, Samoa, or other Pacific Islands)
q. Other, please specify:
Q1e: What is the highest grade or level of school you have completed or the highest degree you
have received?
r. 12
th
grade or less (no diploma)
s. High school graduate or GED equivalent
t. Some college, no degree
93
u. Associate degree: academic, occupational, technical, or vocational program
v. Bachelor’s degree (e.g., BA, AB, BS, BBA)
w. Master’s degree (e.g., MA, MS, Meng, MEd, MBA)
x. Professional school degree (e.g., MD, DDS, DVM, JD)
y. Doctoral degree (e.g., PhD, EdD)
z. Other, please specify:
Q1f: What is your current position or job title?
Q1g: How long have you been in this position (or related position)?
2. When you engage with people, do you focus on any underrepresented groups?
Engage also means communicating, sharing, promoting, or advertising information related to
the Alzheimer’s Disease Research Center and/or Alzheimer’s Disease and related dementias
studies.
2a. Check all the underrepresented groups of people you, or the ADRC engage with. Check all
that apply:
i. Women
ii. Older adults
iii. Rural communities
iv. Speakers of a different language other than English
v. Asian/ Asian American
vi. Hispanic or Latinx
vii. American Indian or Alaska Native
viii. Black or African American
ix. Native Hawaiian or other Pacific Islander
x. Other, please specify:
Q3. Was your Alzheimer’s Disease Research Center and/or Alzheimer’s Disease and
related dementias studies shared with underrepresented racial and ethnic groups at
events between January 1, 2022- December 31, 2022?
Events are any planned meetings or gatherings that occurred with the intention of promoting,
advertising, communicating, or sharing information related to the ADRC and/or ADRC studies.
Q4. How many of these events were completed between January 1, 2022- December 31,
2022?
Events are any planned meetings or gatherings that occurred with the intention of promoting,
advertising, communicating, or sharing information related to the ADRC and/or ADRC studies.
4a. Of these events, how many were in-person?
94
4b. Of these events, how many were online?
Q5. Were these events specifically designed and intended to engage with underrepresented
racial and ethnic groups?
Events are any planned meetings or gatherings that occurred with the intention of promoting,
advertising, communicati ng, or sharing information related to the ADRC and/or ADRC studies.
Q6. Is your ADRC online or on social media?
Q6a. If so, check all that apply:
a. Webpage
b. Blog
c. Twitter
d. Facebook
e. YouTube
f. Instagram
g. TikTok
h. Other, please specify:
Q7. How are Alzheimer’s Disease and related dementias studies at your ADRC shared with
underrepresented racial and ethnic groups?
Please only select activities that solicit participation or involvement with the ADRC or ADRC
studies. This includes but is not limited to in-person or online interactions, meetings, gatherings,
and other communication practices that occurred with the intention of promoting, advertising,
or sharing information related to the ADRC and/or ADRC studies.
Check all that apply:
i. Word of mouth
j. Referrals from community organizations, hospitals, clinics, or medical
providers
k. Tabling at health fairs, community 10ks, 5ks, community gatherings
l. Health education presentations (i.e., brain health)
m. Self-enlisted participants that would like more information (i.e., contact
lists where people write their information and are later contacted)
n. Formal lectures by speakers on the latest ADRD research
o. Conferences or workshops on Alzheimer’s Disease and related dementias
p. Email solicitations
q. Study flyers
r. Post cards
s. Letters
95
t. Telephone calls “cold calls”, one-to-one solicitations over the phone
u. Newspaper ads
v. Billboard ads
w. Radio ads
x. Social media posts (e.g., Facebook, Instagram, YouTube, etc.)
y. Other, please specify:
Q8. Are consent forms for studies or other IRB documents (Information sheets, flyers, etc.)
available in different languages?
b. Please specify, what languages:
Abstract (if available)
Abstract
Disparities in research participation by minoritized racial and ethnic groups persist, despite initiatives by the National Institutes of Health, such as the Revitalization Act of 1993. Thirty years since the Revitalization Act, barriers to minoritized racial and ethnic groups’ participation in research are cited. Limited transportation, time; understanding of research; cultural beliefs and values are cited for their low participation rates in research studies. Most commonly cited is mistrust as a result of past historical events and policies that contributed to their maltreatment and thereby disparities in participation. It is for this reason the Trust in Community-Academic Research Partnership (TICARP) framework will be used. This study will specifically expand on the implementation of the authentic, effective, and transparent communication dimension, a part of the TICARP framework. A multiple case study of 14 national Alzheimer’s Disease Research Centers (ADRCs) across geographical regions in the United States was completed. The purpose of this dissertation is to examine communication strategies used by different ADRCs across geographical regions in the United States. Research personnel from ADRCs were interviewed, documents related to communication practices were collected and an online ethnography was completed as part of this study. Findings demonstrate what Alzheimer’s Disease and related dementias (ADRD) research opportunities are being shared with minoritized racial and ethnic groups; how these opportunities are shared; and potential differences in communication strategies being used by these ADRCs across racial and ethnic groups. This information can support future endeavors by research institutions and funders on ways that authentic, effective, and transparent communication practices can be used to establish and maintain trust thereby increasing minoritized racial and ethnic groups’ participation in research.
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Asset Metadata
Creator
Martínez, Beatrice
(author)
Core Title
Alzheimer’s disease and related dementias research communication practices with minoritized racial and ethnic groups: a multiple case study
School
Suzanne Dworak-Peck School of Social Work
Degree
Doctor of Philosophy
Degree Program
Social Work
Degree Conferral Date
2023-08
Publication Date
08/10/2023
Defense Date
06/02/2023
Publisher
University of Southern California. Libraries
(digital)
Tag
Alzheimer's disease,Alzheimer's disease research,dementia,health disparities,health equity,minoritized racial groups,OAI-PMH Harvest,recruitment science
Language
English
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Aranda, Maria (
committee chair
), Barrio, Concepcion (
committee member
), Farias, Albert (
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Tags
Alzheimer's disease
Alzheimer's disease research
dementia
health disparities
health equity
minoritized racial groups
recruitment science