Connecting Implementation Science, Community-Engaged Research, and Health Promotion to Address Cancer Inequities in Massachusetts: The UMB/DF-HCC U54 Outreach Core

The Outreach Core of the U54 Partnership between the Dana-Farber/Harvard Cancer Center and the University of Massachusetts Boston created a new model for addressing cancer inequities that integrates implementation science, community-engaged research, and health promotion. Key elements of the approach include engaging a Community Advisory Board, supporting students from underrepresented minority backgrounds to conduct health promotion and community-engaged research, increasing the delivery of evidence-based cancer prevention programs to underserved communities (directly and by training local organizations), supporting research-practice partnerships, and disseminating findings. Our model highlights the need for long-term investments to connect underserved communities with evidence-based cancer prevention.

COVID-19 as a Social Disease: Qualitative Analysis of COVID-19 Prevention Needs, Impact of Control Measures and Community Responses Among Racialized/Ethnic Minorities in Antwerp, Belgium

Background: In high income countries, racialized/ethnic minorities are disproportionally affected by COVID-19. We lack in-depth understanding of these communities’ experiences with and responses to COVID-19 despite the established importance of community involvement in epidemic preparedness. We explored information and prevention needs, coping mechanisms with COVID-19 control measures and their impact on lived experiences among selected racialized/ethnic minority communities.Methods: This qualitative rapid assessment conducted in Antwerp/Belgium used an interpretative and participatory approach. We included migrant communities with geographic origins ranging from Sub-Saharan Africa, North-Africa to the Middle East, Orthodox Jewish communities and community workers working with these groups. Data were collected between May 2020 - May 2021 through key informant-, in-depth interviews and group discussions (N=71). Transcripts were analyzed inductively, adopting a reflexive thematic approach. A community advisory board provided feedback throughout the research process.Results: Participants indicated the need for tailored information in terms of language and timing. At the start of the epidemic, they perceived official public health messages as insufficient to reach all community members. Information sources included non-mainstream (social) media and media from home countries, hampering a nuanced understanding of virus transmission mechanisms and local and national protection measures. Participants felt the measures’ most negative impact on their livelihoods (e.g. loss of income, disruption of social and immigration support). Economic insecurity triggered chronic stress and fears at individual and family level. High degrees of distrust in authorities and anticipated stigma were grounded in previously experienced racial and ethnic discrimination. Community-based initiatives mitigated this impact, ranging from disseminating translated and tailored information, providing individual support, and successfully reaching community members with complex needs (e.g. the elderly, digitally illiterate people, those with small social networks or irregular legal status). Conclusion: Study participants’ narratives showed how coping with and responding to COVID-19 was strongly intertwined with socio-economic and ethnic/racial characteristics, justifying conceptualizing COVID-19 a social disease. At the same time, communities demonstrated resilience in responding to these structural vulnerabilities. From a health equity perspective, we provide concrete policy recommendations grounded in insights into communities’ structural vulnerabilities and resilience.

Using Focus Groups to Understand Dialysis Staff Perspectives on Delivering Transplant Education

Introduction Kidney transplant education in dialysis facilities could be optimized with internet resources, like videos, but most qualitative research predates widespread availability of online video education about kidney transplantation. To improve understanding of dialysis staff transplant education practices, as well as the potential value of video, we conducted focus groups of dialysis center staff members in Buffalo, NY. Methods/Approach Seventeen focus groups (97 participants: 53 nurses, 10 dialysis technicians, 6 social workers, 6 dieticians, 7 administrative personnel, 2 trainees, and 1 insurance coordinator) from 8 dialysis facilities in Buffalo, NY, were conducted, audio-recorded, transcribed, and analyzed. After thematic data analysis, a diverse patient and caregiver community advisory board was invited to comment, and their voices were integrated. Findings: Five key themes were identified that captured barriers to transplant education delivery and how online video could be a facilitator: (1) delivery of transplant education was reliant on one person, (2) other dialysis staff had time to answer transplant questions but felt uninformed, (3) patient lack of interest in existing supplementary transplant education, (4) patient disinterest in transplantation education was due to education timing, feeling overwhelmed, and transplant fear/ambivalence, and (5) video education could be flexible, low effort, and spark transplant interest. Study limitations are potential selection bias and inclusion of English-speaking participants only. Discussion Dialysis staff barriers of time, insufficient knowledge, and limited resources to provide education to patients and their care partners may be mitigated with online educational videos without increasing staff workload.

Trans*Forming Access and Care in Rural Areas: A Community-Engaged Approach

Research indicates that rural transgender and gender diverse (TGD) populations have a greater need for health services when compared with their urban counterparts, face unique barriers to accessing services, and have health disparities that are less researched than urban TGD populations. Therefore, the primary aim of this mixed-methods study (n = 24) was to increase research on the health care needs of TGD people in a rural Appalachian American context. This study was guided by a community-engaged model utilizing a community advisory board of TGD people and supportive parents of TGD children. Quantitative results indicate that travel burden is high, affirming provider availability is low, and the impacts on the health and mental health of TGD people in this sample are notable. Qualitative results provide recommendations for providers and health care systems to better serve this population. Integrated mixed-methods results further illustrate ways that rural TGD people and families adapt to the services available to them, sometimes at significant economic and emotional costs. This study contributes to the small but growing body of literature on the unique needs of rural TGD populations, including both adults and minors with supportive parents, by offering insights into strategies to address known disparities.

Going Into a Community, We Need to Start From Where They’re At: Caregiver and Advocate Perspectives

We recorded and inductively coded an open-ended discussion of jargon surrounding “dementia” with the “Supporting Dementia Caregivers After Death” community advisory board (CAB). CAB-members included current and former caregivers of PLWD due to early- and normal-onset Alzheimer’s, Lewy body, and Parkinson’s, a co-president of the Alzheimer’s Association (ALZ) Young Champions, a dementia trainer/consultant and member of a Catholic church that preserves American Indian spiritual traditions, a senior program manager at ALZ who was entrusted by American Indian reservation elders to provide dementia education, a care partner support group leader, and an Alzheimer’s Ambassador chosen by multiple US senators. Themes identified included differential inclusiveness of terms like “memory loss” versus “dementia”, misuse and misunderstanding of “dementia” versus “Alzheimer’s,” and the difficulty of translating “dementia” into the American Indian Ojibwe (i.e., Anishinaabemowin) language where suggested translations directly translated to “slow memory loss”, “brain deterioration”, “absent mindedness”, or even “craziness”.

Recruitment and Retention Framework for a Timed-Activity Intervention Among Older Latinos With ADRD

Latino participation in ADRD research is essential to advance cognitive health equity. We present results of an adapted framework to increase recruitment and retention of older Latinos with ADRD and caregivers (CGs) in a timed-activity intervention. Framework factors include 3 structures with strategies informed by a Latino Community Advisory Board. For Characteristics of Study Processes, we included linguistically equivalent data collection procedures/measures, scheduled at times most convenient for participants/CGs. Participants were called weekly for questions/guidance with procedures. Intervention sessions built-in additional time to embed Latino cultural values: familismo, personalismo, confianza and respeto. Study Team Infrastructure, included bilingual/bicultural members/students; and trusted community partners to assist with participant referrals. For Preferences and Beliefs Toward Research, we conducted a series of focus groups to understand beliefs about “memory health” and perceptions of ADRD risks. Strategies yielded effective results. We reached our recruitment goal; started a wait-list of interested participants; had zero (n=0) attrition.

Speaking of Dementia: How to Refer to Dementia in Racial-Ethnic Minority Community-Facing Communications

What do you call “dementia”? In academic writing, researchers often chose the inclusive, “Alzheimer’s Disease and Alzheimer’s Disease Related Dementias (AD/ADRD)”. When referring to the people experiencing dementia, the person-centered language: “persons living with dementia (PLWD)” is preferred. This is a welcome departure from the antiquated disease-centered language of “dementia patients” or “the demented”. Still, AD/ADRD and PLWD may be less fitting in community-facing education or participant recruitment. For instance, community-facing materials may benefit from choosing terms like “memory loss”, “issues related to memory or aging”, or “changes in ability, behavior, or judgment”. In this symposium we present a range of viewpoints focused on how to refer to “dementia” in community-facing materials/conversations. These viewpoints include those of several racial and ethnic groups (i.e., African Americans, African Immigrants, American Indians, Asians, Hispanics/Latinos/as/x/e, and Whites). We also include viewpoints from people interfacing with many different diseases that cause dementia (i.e., Alzheimer’s disease, dementia with Lewy bodies, Early-onset Alzheimer’s disease, and Parkinson’s disease dementia) because of the different manifestations of dementia that can arise from those diseases. Viewpoints were gathered through 1) a nation-wide community advisory board, 2) community conversations with African Immigrants, 3) a national effort to increase the representation of Hispanics/Latinos/as/x/e PLWD in AD/ADRD research, and 4) eight community projects exploring the African American AD/ADRD experience. These talks will present possible terms to use within groups, considerations to increase inclusiveness, issues with translation into native languages, considerations surrounding symptoms that may be most recognizable to community members, and stigmatized terminology.

A Systems-Wide Approach for Early Detection and Management of Dementia in Primary Care

Dementia is frequently unrecognized and under-reported by health care providers. The needs of an aging population increase the burden on an already over-worked primary care system that is often without the appropriate training, resources, and reimbursement to address the growing number of people with cognitive decline in the US. In this symposium we present a systems-wide approach within University of Washington (UW) Primary Care to increase awareness of early signs and symptoms, detection of cognitive impairment, and support of providers, patients and caregivers that will ultimately improve outcomes of care. This quality improvement (QI) program integrates stakeholder-selected components of the GSA KAER (Kickstart-Assess-Evaluate and Refer) Model and Toolkit (2020 Edition), developed by the Gerontological Society of America (GSA), into primary care practice. We describe content and logistics of a continuing education intervention for primary care providers and clinical staff to increase skills for evaluation and management of dementia. Working with UW clinic managers and information technology (IT), we have developed a pragmatic system for streamlining operations and documenting care utilizing newly developed interdisciplinary workflows and electronic health record order sets. Using input from our Community Advisory Board, we explain development of a web-based resource directory to be used in-clinic and at home to support providers, staff, patients, families, and caregivers across cognitive changes. Strategies presented here are aimed to help other health care systems initiate steps to integrate KAER and other tools into a practical QI program for improving detection and management of dementia through support of primary care.

Promoting Connections Through Creative Approaches to Research Engagement for Older African Americans

This presentation will feature innovative retention approaches that contributed to sustaining connections to older Black participants in the long-standing Healthier Black Elders Center (HBEC). The HBEC aims to address and reduce health disparities through research and education. In 2020, this outreach has included a telephone outreach program and a weekly social group, “The Party Line,” to promote connections and collect data on mental health, coping mechanisms and newly acquired skills, as well as health care access including access to masks, testing and tele-health. The presentation will also describe tailored approaches to initiating a Community Advisory Board and programming in Flint, MI and creative efforts to retain participants in Detroit, MI, thus ensuring the relationships between researchers and older community members are sustained despite program modifications.