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Browsing by Author "Eliacin, Johanne"
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Item Accelerating diversity in Alzheimer's disease research by partnering with a community advisory board(Wiley, 2023-05-28) Pena-Garcia, Alex; Richards, Ralph; Richards, Mollie; Campbell, Christopher; Mosley, Hank; Asper, Joseph; Eliacin, Johanne; Polsinelli, Angelina; Apostolova, Liana; Hendrie, Hugh; Tackett, Andrew; Elliott, Caprice; Van Heiden, Sarah; Gao, Sujuan; Saykin, Andrew; Wang, Sophia; Medicine, School of MedicineIntroduction: Community advisory boards (CABs) and researcher partnerships present a promising opportunity to accelerate enrollment of underrepresented groups (URGs). We outline the framework for how the CAB and researchers at the Indiana Alzheimer's Disease Research Center (IADRC) partnered to accelerate URG participation in AD neuroimaging research. Methods: CAB and the IADRC researchers partnered to increase the CAB's impact on URG study enrollment through community and research interactions. Community interactions included the CAB collaboratively building a network of URG focused community organizations and collaborating with those URG-focused organizations to host IADRC outreach and recruitment events. Research interactions included direct impact (CAB members referring themselves or close contacts as participants) and strategic impact, mainly by the CAB working with researchers to develop and refine URG focused outreach and recruitment strategies for IADRC and affiliated studies to increase URG representation. We created a database infrastructure to measure how these interactions impacted URG study enrollment. Results: Out of the 354 URG research referrals made to the IADRC between October 2019 and December 2022, 267 referrals were directly referred by the CAB (N = 36) or from community events in which CAB members organized and/or volunteered at (N = 231). Out of these 267 referrals, 34 were enrolled in IADRC and 2 were enrolled in Indiana University Longitudinal Early Onset AD Study (IU LEADS). Of note, both studies require the prospective participants to be willing to do MRI and PET scans. As of December 2022, 30 out of the 34 enrolled participants have received a consensus diagnosis; the majority were cognitively normal (64.7%), with the remainder having mild cognitive impairment (17.6%) or early-stage AD (2.9%). Discussion: The IADRC CAB-researcher partnership had a measurable impact on the enrollment of African American/Black adults in AD neuroimaging studies. Future studies will need to test whether this conceptual model works for other sites and for other URGs.Item Barriers and facilitators to participating in Alzheimer’s disease biomarker research in Black and White older adults(Wiley, 2023-06-05) Eliacin, Johanne; Polsinelli, Angelina J.; Epperson, Francine; Gao, Sujuan; Van Heiden, Sarah; Westmoreland, Glenda; Richards, Ralph; Richards, Mollie; Campbell, Christopher; Hendrie, Hugh; Risacher, Shannon L.; Saykin, Andrew J.; Wang, Sophia; Medicine, School of MedicineIntroduction: The study examined Black and White prospective participants' views of barriers to and facilitators of participation in Alzheimer's disease (AD) biomarker research. Methods: In a mixed-methods study, 399 community-dwelling Black and White older adults (age ≥55) who had never participated in AD research completed a survey about their perceptions of AD biomarker research. Individuals from lower socioeconomic and education backgrounds and Black men were over-sampled to address perspectives of traditionally under-represented groups. A subset of participants (n = 29) completed qualitative interviews. Results: Most participants expressed interest in biomarker research (overall 69%). However, Black participants were comparatively more hesitant than White participants (28.9% vs 15.1%), were more concerned about study risks (28.9% vs 15.1%), and perceived multiple barriers to participating in brain scans. These results persisted even after adjusting for trust and perceived knowledge of AD. Information was a primary barrier (when absent) and incentive (when provided) for AD biomarker research participation. Black older adults desired more information about AD (eg, risk, prevention), general research processes, and specific biomarker procedures. They also desired return of results to make informed decisions about their health, research-sponsored community awareness events, and for researchers to mitigate the burden placed on participants in research (eg, transportation, basic needs). Conclusion: Our findings increase representativeness in the literature by focusing on individuals with no history of AD research experience and those from traditionally underrepresented groups in research. Results suggest that the research community needs to improve information sharing and raising awareness, increase their presence in the communities of underrepresented groups, reduce incidental costs, and provide valuable personal health information to participants to increase interest. Specific recommendations for improving recruitment are addressed. Future studies will assess the implementation of evidence-based, socioculturally sensitive recruitment strategies to increase enrollment of Black older adults into AD biomarker studies. HIGHLIGHTS: Individuals from under-represented groups are interested in Alzheimer's disease (AD) biomarker research. After adjusting for trust and AD knowledge, Black participants were still more hesitant .Information is a barrier (when absent) to and incentive (when given) for biomarker studies. Reducing burden (e.g., transportation) is essential for recruiting Black older adults.Item Black Americans' perceptions of Alzheimer's disease, a healthy brain, and strategies for brain health promotion(Elsevier, 2024-04-19) Eliacin, Johanne; Polsinelli, Angelina; Cameron, Kenzie A.; Saykin, Andrew J.; Wang, Sophia; Medicine, School of MedicineObjectives: Lack of awareness of Alzheimer's disease (AD) among Black Americans may undermine their ability to identify potential AD risk. We examined Black Americans' perceptions and knowledge of AD, and views of a healthy brain, which may contribute to the development of effective and culturally sensitive strategies to address racial disparities in AD. Methods: We conducted a mixed-methods study, integrating a cross-sectional survey of 258 older (>55 years) Black participants and qualitative interviews with a sub-sample of N = 29. Both data sets were integrated to inform the results. Results: Participants endorsed having little knowledge of AD. While most participants reported practicing a healthy lifestyle to promote a healthy brain, the range of activities listed were limited. Participants made several suggestions to increase AD awareness, which includes using AD educational materials containing information that would benefit the whole family, not only older adults. Outreach approaches that address both individual behaviors and structural factors were also encouraged. Conclusion: Our findings identify ongoing needs to improve AD awareness among traditionally under-represented groups. Innovation: The study utilized novel approaches to examine participants' perspectives of AD that included a diverse sample of research naïve participants, and integrated exploration of participants' views of AD and brain health.Item Characterizing health care utilization following hospitalization for a traumatic brain injury: a retrospective cohort study(Taylor & Francis, 2021) Eliacin, Johanne; Yang, Ziyi; Kean, Jacob; Dixon, Brian E.; Psychiatry, School of MedicineObjective: The purpose of this study was to characterize health services utilization among individuals hospitalized with a traumatic brain injury (TBI) 1-year post-injury. Methods: Using a retrospective cohort design, adult patients (n = 32, 042) hospitalized with a traumatic brain injury between 2005 and 2014 were selected from a statewide traumatic brain injury registry. Data on health services utilization for 1-year post-injury were extracted from electronic medical and administrative records. Descriptive statistics and logistic regression were used to characterize the cohort and a subgroup of superutilizers of health services. Results: One year after traumatic brain injury, 56% of participants used emergency department services, 80% received inpatient services, and 93% utilized outpatient health services. Superutilizers had ≥3 emergency department visits, ≥3 inpatient admissions, or ≥26 outpatient visits 1-year post-injury. Twenty-six percent of participants were superutilizers of emergency department services, 30% of inpatient services, and 26% of outpatient services. Superutilizers contributed to 81% of emergency department visits, 70% of inpatient visits, and 60% of outpatient visits. Factors associated with being a superutilizer included sex, race, residence, and insurance type. Conclusions: Several patient characteristics and demographic factors influenced patients’ healthcare utilization post-TBI. Findings provide opportunities for developing targeted interventions to improve patients’ health and traumatic brain injury-related healthcare delivery.Item Communicating with providers about racial healthcare disparities: The role of providers’ prior beliefs on their receptivity to different narrative frames(Elsevier, 2018) Burgess, Diana J.; Bokhour, Barbara G.; Cunningham, Brooke A.; Do, Tam; Eliacin, Johanne; Gordon, Howard S.; Gravely, Amy; Jones, Dina M.; Partin, Melissa R.; Pope, Charlene; Saha, Somnath; Taylor, Brent C.; Gollust, Sarah E.; Psychology, School of ScienceObjective Evaluate narratives aimed at motivating providers with different pre-existing beliefs to address racial healthcare disparities. Methods Survey experiment with 280 providers. Providers were classified as high or low in attributing disparities to providers (HPA versus LPA) and were randomly assigned to a non-narrative control or 1 of 2 narratives: “Provider Success” (provider successfully resolved problem involving Black patient) and “Provider Bias” (Black patient experienced racial bias, which remained unresolved). Participants' reactions to narratives (including identification with narrative) and likelihood of participating in disparities-reduction activities were immediately assessed. Four weeks later, participation in those activities was assessed, including self-reported participation in a disparities-reduction training course (primary outcome). Results Participation in training was higher among providers randomized to the Provider Success narrative compared to Provider Bias or Control. LPA participants had higher identification with Provider Success than Provider Bias narratives, whereas among HPA participants, differences in identification between the narratives were not significant. Conclusions Provider Success narratives led to greater participation in training than Provider Bias narratives, although providers’ pre-existing beliefs influenced the narrative they identified with. Practice implications Provider Success narratives may be more effective at motivating providers to address disparities than Provider Bias narratives, though more research is needed.Item Communication and Activation in Pain to Enhance Relationships and Treat Pain with Equity (COOPERATE): Rationale, study design, methods, and sample characteristics(Elsevier, 2022-07) Matthias, Marianne S.; Adams, Jasma; Burgess, Diana J.; Daggy, Joanne; Eliacin, Johanne; Flores, Perla; Hirsh, Adam T.; Myers, Laura J.; Perkins, Anthony J.; Menen, Tetla; Procento, Philip; Rand, Kevin L.; Salyers, Michelle P.; Shanahan, Mackenzie L.; Bair, Matthew J.; Medicine, School of MedicineBackground Chronic pain is associated with profound negative effects, and racial disparities are well-documented in chronic pain treatment. In addition, Black patients report poorer communication with providers and exhibit lower levels of patient activation (self-management self-efficacy) than White patients. Although the causes of healthcare disparities are complex and require intervention at multiple levels, empowering patients is one critical path to achieving health equity. The current study is a coaching intervention focused on increasing patient activation and building communication skills for Black patients with chronic pain. Methods In this randomized controlled trial, 250 Black patients with chronic pain were randomized to either the coaching intervention or an attention control arm. Intervention patients attended 6 telephone-delivered individual coaching sessions over 12 weeks. Coaching focused on clarifying and prioritizing goals and on communication skills, such as agenda setting. The primary outcome is patient activation. Secondary outcomes include communication self-efficacy, pain intensity and interference, and psychological functioning. Discussion Having the knowledge and confidence to participate in one's pain care, coupled with the skills needed to effectively communicate with providers, is essential to optimize chronic pain care. This is particularly important for Black patients who often experience lower quality pain care. Interventions such as COOPERATE hold promise for helping patients to acquire the requisite tools to take greater control of their chronic pain care.Item Consumer and Relationship Factors Associated with Shared Decision-Making in Mental Health Consultations(2014-12) Matthias, Marianne S.; Fukui, Sadaaki; Kukla, Marina; Eliacin, Johanne; Bonfils, Kelsey A.; Firmin, Ruth; Oles, Sylwia; Adams, Erin L.; Collins, Linda A.; Salyers, Michelle P.; Department of Psychology, IU School of ScienceObjective: This study explored the association between shared decision making and consumers’ illness management skills and consumer-provider relationships. Methods: Medication management appointments for 79 consumers were audio recorded. Independent coders rated overall shared decision making, minimum level of shared decision making, and consumer-provider agreement for 63 clients whose visit included a treatment decision. Mental health diagnoses, medication adherence, patient activation, illness management, working alliance, and length of consumer-provider relationships were also assessed. Correlation analyses were used to determine relationships among measures. Results: Overall shared decision making was not associated with any variables. Minimum levels of shared decision making were associated with higher scores on the bond subscale of the Working Alliance Inventory, indicating a higher degree of liking and trust, and with better medication adherence. Agreement was associated with shorter consumer-provider relationships. Conclusions: Consumer-provider relationships and shared decision making might have a more nuanced association than originally thought.Item Developing a brief assessment of social risks for the Veterans Health Administration Survey of Healthcare Experiences of Patients(Wiley, 2023) Hausmann, Leslie R. M.; Cohen, Alicia J.; Eliacin, Johanne; Gurewich, Deborah A.; Lee, Richard E.; McCoy, Jennifer L.; Meterko, Mark; Michaels, Zachary; Moy, Ernest M.; Procario, Gregory T.; Russell, Lauren E.; Schaefer, James H., Jr.; Medicine, School of MedicineObjective: To determine whether a 6- or 12-month look-back period affected rates of reported social risks in a social risk survey for use in the Veterans Health Administration and to assess associations of social risks with overall health and mental health. Study design: Cross-sectional survey of respondents randomized to 6- or 12-month look-back period. Data sources and study setting: Online survey with a convenience sample of Veterans in June and July 2021. Data collection/extraction methods: Veteran volunteers were recruited by email to complete a survey assessing social risks, including financial strain, adult caregiving, childcare, food insecurity, housing, transportation, internet access, loneliness/isolation, stress, discrimination, and legal issues. Outcomes included self-reported overall health and mental health. Chi-squared tests compared the prevalence of reported social risks between 6- and 12-month look-back periods. Spearman correlations assessed associations among social risks. Bivariate and multivariable logistic regression models estimated associations between social risks and fair/poor overall and mental health. Principal findings: Of 3418 Veterans contacted, 1063 (31.10%) responded (87.11% male; 85.61% non-Hispanic White; median age = 70, interquartile range [IQR] = 61-74). Prevalence of most reported social risks did not significantly differ by look-back period. Most social risks were weakly intercorrelated (median |r| = 0.24, IQR = 0.16-0.31). Except for legal issues, all social risks were associated with higher odds of fair/poor overall health and mental health in bivariate models. In models containing all significant social risks from bivariate models, adult caregiving and stress remained significant predictors of overall health; food insecurity, housing, loneliness/isolation, and stress remained significant for mental health. Conclusions: Six- and 12-month look-back periods yielded similar rates of reported social risks. Although most individual social risks are associated with fair/poor overall and mental health, when examined together, only adult caregiving, stress, loneliness/isolation, food, and housing remain significant.Item Factors influencing patients’ preferences and perceived involvement in shared decision making in mental health care(Informa, 2015-02) Eliacin, Johanne; Salyers, Michelle P.; Kukla, Marina; Matthias, Marianne S.; Department of Psychology, IU School of ScienceBackground: Although research has suggested that patients desire to participate in shared decision-making, recent studies show that most patients take a passive role in their treatment decisions. The discrepancy between patients’ expressed desire and actual behaviors underscores the need to better understand how patients perceive shared decision-making and what factors influence their participation. Aims: To investigate patients’ preferences and appraisals of their involvement in treatment decisions. Methods: Fifty-four qualitative interviews were conducted with veterans receiving outpatient mental health care at a U.S. Veterans Affairs Medical Center. Interviews were analyzed using thematic analysis. Results: Participants outlined several factors that influence their preferences and involvement in treatment decisions. These include the patient–provider relationship, fear of being judged, perceived inadequacy, and a history of substance abuse. Conclusion: Patients’ preferences and willingness to engage in shared decision-making fluctuate over time and are context dependent. A better understanding of these factors and a strong patient–provider relationship will facilitate better measurement and implementation of shared decision-making.Item Factors influencing the participation of Black and White Americans in Alzheimer’s disease biomarker research(Wiley, 2022-12-07) Eliacin, Johanne; Hathaway, Elizabeth; Wang, Sophia; O’Connor, Caitlin; Saykin, Andrew J.; Cameron, Kenzie A.; Psychiatry, School of MedicineIntroduction: Alzheimer's disease (AD) is a public health priority. AD biomarkers may vary based on race, but the recruitment of diverse participants has been challenging. Methods: Three groups of Black and White participants with and without prior research advocacy or participation were interviewed individually or in focus groups to better understand perspectives related to AD biomarker research participation. A rapid qualitative data analytic approach was used to analyze the data. Results: Identified barriers to AD biomarker research participation included hesitancy due to fear, distrust of research and researchers, lack of relevant knowledge, and lack of research test results disclosure. Drivers for engagement in biomarker research procedures included knowledge about research, AD, and related clinical procedures, perceived benefits of participation, and outreach from trusted sources. Discussion: Participants' comments related to the need for diversity in research and desire for results disclosure suggest opportunities to engage Black individuals. Highlights: Black Americans experience more salient barriers to Alzheimer's disease (AD) biomarker research participation.Concerns about research diversity influence research participation decisions.Research test disclosure may affect research participation and retention.
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