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OBJECTIVES: Approximately 6.2 million Americans aged 65 or older have Alzheimer’s disease or related dementias (ADRD). Unpaid family members and friends provide the bulk of caregiving for these individuals. Caregiving in rural areas adds unique challenges, particularly for ethnically/racially diverse caregivers. This study provides a profile of diverse, rural ADRD caregivers with an emphasis on multilevel factors that influence physical and mental health. METHODS: A cross-sectional survey was conducted with 156 diverse rural ADRD caregivers. RESULTS: 65% of participants identified as White/Non-Hispanic (WNH; n=101) and 35% identified as ethnically/racially diverse (ERD; n=55). The majority of participants reported economic deprivation. More ERD caregivers were uninsured and had at least one chronic health condition. Higher proportions of ERD caregivers smoked cigarettes, consumed alcohol regularly, and had not seen or talked to a doctor in the previous year. There were no ethnic/racial group differences in stress, anxiety, depressive symptoms, subjective health, or sleep quality. CONCLUSION: Rural caregivers, regardless of ethnicity/race, may benefit from extra supports in order to maintain optimal health. Further research is needed to disentangle the complex relationship between culture, caregiving, and health.

As the coronavirus disease (COVID-19) pandemic continued to progress into 2021, appeals were made to take a stronger focus on the perceptions and practices of youth and young adults (YYAs) regarding COVID-19 mitigation, as well as the impact of mitigation strategies on the overall wellbeing of YYAs. In this paper, we describe our efforts to increase YYA engagement in Arizona’s COVID-19 response by pairing embedded values from youth participatory action research (YPAR) with a crowdsourcing challenge contest design. The research protocol and implementation are described, followed by a thematic analysis of YYA-led messaging portrayed in 23 contest submissions and reflections formed by 223 community voters after viewing contest submissions. The authors conclude that a YYA-led crowdsourcing contest presented an opportunity to (a.) investigate the perceptions and behaviors of YYAs and their networks regarding the COVID-19 pandemic and mitigation efforts and (b.) amplify the voices of YYAs in the pandemic response. Perhaps even more importantly, this approach also offered insight into the exacerbated impact of the pandemic on YYA mental health and wellbeing, and the utility of YPAR in raising awareness of these effects among the contexts and social networks of YYAs.

The physical and mental health benefits of physical activity in all populations are well established. In 2019, incarcerated women at a Southwest county jail were observed during “recreation time,” a time when physical activity is encouraged, to identify the proportion of women who participated in recreation time and their physical activity levels. During observed recreation times, 28% of women attended; 56% were sedentary, 4% engaged in vigorous physical activity, and approximately 40% walked or performed similarly moderate physical activity. Future research should identify barriers to being physically active while incarcerated, leading to targeted interventions to promote physical activity.

As the United States’ aging population grows, there will be increased prevalence of individuals living with Alzheimer’s Disease and related dementias (ADRD), who largely rely on the support of their family caregivers. Family caregivers residing in rural areas face additional challenges with managing caregiving responsibilities and navigating support services. The purpose of this multilevel phenomenological qualitative study was to explore the assets, unique needs, and resources of rural-residing ADRD caregivers from the caregiver, provider, and policy influencers’ perspectives. The study took place between 2019 through 2021 in northern Arizona, a largely rural and geographically vast area home to caregivers from diverse backgrounds. Twenty-seven caregivers to a loved one with ADRD participated in focus groups. Twelve health and social services providers and twelve policy influencers, those involved in leadership positions for aging programs or advocacy groups, completed individual interviews. Caregivers demonstrate many assets which contribute to their ability to manage and cope with their caregiving role. However, caregivers face a series of issues related to their caregiving role and need early and ongoing education regarding ADRD. There is a lack of resources available in rural areas, in particular providers, making it challenging to obtain needed resources necessary to support their loved one with ADRD. Furthermore, there is a need for more providers trained in working with aging adults and those experiencing ADRD, and a need for more culturally relevant resources.

The American Association on Intellectual and Developmental Disabilities (AAIDD) has been a leader in the field of intellectual and developmental disabilities since its founding in 1876. Today, student and early career professionals make up approximately 8.5% of the organization, with their engagement supported by the Student and Early Career Professional Interest Network (SECP). An article by Havercamp et al. (2003), “Who Will Lead the Field Beyond 2020?”, recommended organizational changes that have been largely addressed in the years following by SECP. The present research replicates Havercamp et al.'s (2003) original survey of the organization's student and early career professionals, and results support the effectiveness of SECP as a welcoming platform from which students and early career professionals can establish themselves in the organization.

People with intellectual and developmental disabilities (PWIDD) often encounter barriers in the health care system when seeking general and specialized medical care. Literature has shown that PWIDD experience a lack of proper screening for and prevention of cancer compared to the general population. However, less is known regarding the cancer care and survivorship of PWIDD, especially in the United States. In this review, we examine what is currently known about the primary, psychosocial, and palliative care of PWIDD diagnosed with cancer. Our analyses reveal an immediate need for improvement in caregiver support, collaboration among health care providers, and ethical approaches to information disclosure for this population, as well as the establishment of more reliable standards of care through additional research with PWIDD.

Like other minoritized groups, people with disabilities experience lack of access to health care. People with intellectual and developmental disabilities (IDD), which are lifelong disabilities diagnosed in childhood requiring varying levels of support for completing daily activities, are less likely to receive preventive health care such as cancer screening. Furthermore, Native American women are less likely than White women to receive cancer screenings. In this qualitative research with Native American women with IDD, their caregivers, healthcare and service providers, and community leaders, we asked, “What are the influences on breast and cervical cancer screening for Native American women with IDD?” with the goal of adapting an existing cancer screening education program. Semi-structured in-depth interviews (N = 48) were audio recorded and transcribed verbatim for analysis. Two coders used a constant comparative method to code and revise the a priori codebook with subthemes and new codes. Results highlighted individual, interpersonal, and community/institutional influences on screening, emphasizing the individual effects of social inequity on this population, the importance of ableist bias in recommending cancer screenings, and opportunities to integrate traditional ways of knowing with allopathic medicine. Results of this work were used to adapt a cancer screening education program for Native American women with IDD.

BACKGROUND AND OBJECTIVES. Many individuals with Alzheimer’s Disease and Related Dementias (ADRD) receive care from family members and friends. Rurality adds increased complexity to care, especially for diverse caregivers. This study details the development and content-validation process for a community assessment survey for rural White, Latinx, and American Indian/Alaska Native ADRD caregivers. METHODS. Foundational survey items were based upon instruments validated with diverse rural caregivers. A modified Delphi process (two rounds) was used to refine items. The process concluded when 75%+ of experts agreed the survey was: (1) inclusive of different cultural groups; (2) respectful of cultural values and norms; (3) comprehensive with respect to needs, assets, and resources, and; (4) relevant to the experiences of diverse rural caregivers. RESULTS. Round One of the process (N=9 panelists) resulted in the elimination of two survey sections, a greater focus on issues including transportation and roles of extended family members, and the inclusion of open-ended questions. Round Two (N=6 panelists) resulted in further improvements, particularly to the sections about cultural customs, beliefs, and traditions and interactions with healthcare and other providers. Benefits of the process included raising awareness about rural caregiving issues and maximizing data quality. Challenges included honoring the diversity of respondents’ opinions and balancing research rigor with community utility. CONCLUSIONS. This community assessment survey may help researchers to better understand the needs and culturally-based strengths of diverse rural family caregivers.

Technology use is a key form of social inclusion and a means to engage in community participation. People with intellectual and developmental disabilities (IDD) experience a digital divide with less technology access as compared to their peers. We used data from the National Longitudinal Transition Study of 2012 to study technology use and access to instruction among adolescents with IDD compared to adolescents with other disabilities and adolescents without disabilities. Results indicate adolescents with IDD use technology less, receive less technology training, and engage in fewer social inclusion opportunities than their peers. Implications for future research, policy, and practice are provided, including promoting digital citizenship training during transition planning and the use of social capital theory.

BACKGROUND Women with intellectual and/or developmental disabilities (IDD) do not receive breast and cervical cancer screening at the same rates as women without IDD. Intellectual and/or developmental disabilities are diagnosed in childhood, are lifelong, and involve difficulty with adaptive behaviors and/or intellectual functioning. Native American women also experience disparities in breast and cervical cancer screening. Despite these disparities, women with IDD are often not included in health promotion programs, and there is a need for evidence-based programming for those with intersectional identities, such as Native American women with IDD. OBJECTIVE The goal of this study is to assess the feasibility and acceptability of My Health My Choice (MHMC), an adaptation of the Women Be Healthy 2 (WBH2) program. There are two parts to the study: 1) adaptation of the WBH2 program and 2) feasibility and acceptability testing of MHMC. METHODS Females over 18 years old who identify as Native American with IDD and their caregivers (N=30 women-caregiver dyads) are eligible for the study. Participants, who will be affiliated with 2 partnering sites in Arizona (1 rural, 1 urban), will complete pre- and post- surveys assessing knowledge, self-efficacy, and screening expectations prior to and immediately after completing the program. In addition, all participants will complete brief satisfaction surveys following each of the six educational sessions. A sub-sample of Native American women with IDD (n=12), caregivers (n=12), and community health educators (n=2) who participate in the My Health My Choice program will provide semi-structured qualitative input regarding the content, delivery, and cultural relevance of the program. RESULTS Adaptation of the culturally responsive MHMC curriculum is complete. As of November 2021, the project team has started recruitment for feasibility and the acceptability study. Pre-post-measures in cancer screening knowledge, self-efficacy, and screening expectations will explore improvements among participants. CONCLUSIONS Results from the feasibility and acceptability testing of MHMC will guide future implementation studies of the program.

American Indian and Alaska Native (AI/AN) youth face a history of adversity and trauma that are linked to academic and health concerns. Culturally grounded art-based interventions hold promise to address challenges faced by AI youth. AI culture and wisdom can evoke a sense of capability in youth that strengthens their resilience. This study sought to evaluate a culturally oriented art therapy curriculum on its impact on resilience, stress, and mood for AI youth (n = 36). A paired-samples t-test was conducted to compare the perceived stress scores of the participants before and after a 12-week art intervention. There was a significant decrease in participant perceived stress between the pre (M = 16.7, SD = 4.7) and post conditions (M = 20.4, SD = 4.6); t (24) =, -3.5 p = 0.002). A paired-samples t-test was conducted to compare the mood of each participant before and after each instance of art activity to see if there was a self-reported change in mood. There was a significant improvement in participant mood in 10 out of 11 of the intervention weeks. Although no statistically significant change was found in participant resilience, participants in this study did report high levels of resilience. This study provides promising evidence that a culturally salient after-school art curriculum program can reduce stress and improve mood for urban AI youth.

Background Women with intellectual and developmental disabilities (IDD) do not undergo breast and cervical cancer screening at the same rate as women without IDD. IDDs are diagnosed in childhood, are lifelong, and involve difficulties in adaptive behaviors and intellectual functioning. Native American women also experience disparities in breast and cervical cancer screenings. Despite known disparities, women with IDD are often not included in health promotion programs, and there is a need for evidence-based programming for those with intersectional identities, such as Native American women with IDD. Objective This study aims to assess the feasibility and acceptability of My Health My Choice (MHMC), an adaptation of the Women Be Healthy 2 program. There are 2 parts to the study: adaptation of the Women Be Healthy 2 program and feasibility and acceptability testing of MHMC. Methods Individuals aged over 18 years who identify as Native American females with IDD and their caregivers (N=30 women-caregiver dyads) are eligible for the study. Participants, who are affiliated with 2 partnering sites in Arizona (1 rural and 1 urban), complete pre- and postsurveys assessing knowledge, self-efficacy, and screening expectations before and immediately after completing the program. In addition, all participants complete brief satisfaction surveys after each of the 6 educational sessions. A subsample of Native American women with an IDD (n=12), caregivers (n=12), and community health educators (n=2) who participate in the MHMC program will provide semistructured qualitative input regarding the content, delivery, and cultural relevance of the program. Results The adaptation of the culturally responsive MHMC program was completed in August 2021. In November 2021, the project team began recruitment for feasibility and acceptability studies. Feasibility will be examined using participation metrics, and acceptability will be measured using satisfaction measures. Pre- and postmeasures in cancer screening knowledge, self-efficacy, and screening expectations will examine improvements among participants. Conclusions The results of feasibility and acceptability testing of MHMC will guide future implementation studies of the program. International Registered Report Identifier (IRRID) DERR1-10.2196/37801

Successful integration of health care in rural and underserved communities requires attention to power structures, trust, and disciplinary boundaries that inhibit team-based integration of behavioral and primary health care. This paper reports on perceived successes and ongoing challenges of integrating primary and behavioral health care from the perspectives of providers, community leaders, and community members. Data collection consisted of semi-structured qualitative interviews and focus groups conducted as part of a regional health equity assessment in northern Arizona. The authors explore barriers and successes in integrating health care in rural clinics using the perspective of a social ecological framework and the mediating role of culture. Differing expectations, differing professional areas, and interpersonal interactions were primary factors challenging movement toward integrated health care. Results suggest that providers and policymakers working toward health care integration should consider culture and interpersonal interaction as dynamic mediators, particularly in underserved and rural health care contexts.

Social media is used for civic engagement and building social inclusion. Twitter is one social media tool that facilitates conversations on important societal events. A digital divide between the general population and people with intellectual and developmental disabilities (IDD) remains. Given the divide, we sought to understand the inclusion of the community of people with IDD in the conversations around the 25th anniversary of the Americans with Disabilities Act of 1990 (ADA). We conducted a content analysis of tweets associated with the anniversary and few tweets referenced the community of people with IDD. Our findings suggest that people with IDD are not included in larger civic conversations. Implications include targeted social media training for people with IDD and their support networks.

Background Over the past decade, public health research and practice sectors have shifted their focus away from identifying health disparities and toward addressing the social, environmental, and economic determinants of health equity. Given the complex and interrelated nature of these determinants, developing policies that will advance health equity requires collaboration across sectors outside of health. However, engaging various stakeholder groups, tapping into their unique knowledge systems, and identifying common objectives across sectors is difficult and time consuming and can impede collaborative efforts. Objective The Southwest Health Equity Research Collaborative at Northern Arizona University, in partnership with an 11-member community advisory council, is addressing this need with a joint community-campus effort to develop and implement a Regional Health Equity Survey (RHES) designed to generate an interdisciplinary body of knowledge, which will be used to guide future multisectoral action for improving community health and well-being. Methods Researchers and community partners used facilitated discussions and free listing techniques to generate survey items. The community partners pilot tested the survey instrument to evaluate its feasibility and duration before survey administration. Respondent-driven sampling was used to ensure that participants included leadership from across all sectors and regions of northern Arizona. Results Over the course of 6 months, 206 participants representing 13 sectors across the 5 counties of northern Arizona were recruited to participate in an RHES. Survey response rates, completion percentage, and sector representation were used to assess the effectiveness and feasibility of using a community-engaged apporach for survey development and participant recruitment. The findings describe the current capacity to impact health equity by using a multisectoral approach in northern Arizona. Conclusions The Southwest Health Equity Research Collaborative effectively engaged community members to assist with the development and implementation of an RHES aimed at understanding and promoting multisectoral action on the root causes of health inequity. The results will help to build research and evaluation capacity to address the social, economic, and environmental conditions of health inequity in the region.

Youth aging out of the foster care system have well-documented challenges when transitioning to adulthood. Multiple transition services provide support in the transition process; however, limited research is available regarding youth’s perceptions of programming. In this pilot study, sixteen youth between ages 18 and 20 participated in semi-structured interviews, support mapping, and resiliency measurements to gather the experiences of the transition from foster care. Comparisons between those who chose initial transition supports and those who did not receive or delayed receiving transition supports were initially explored. Common themes emerged in participants’ needs and perceived resiliency regardless of transition support services. All youth reported relationship, trust, and concern for well-being as highly important characteristics in transition team members. A need for earlier transition programming, decision-making opportunities, and life skills courses were important themes in transition programming needs. Implications for policy, research, and practice are presented based upon findings.

Introduction To address health disparities among underserved populations, occupational therapists can participate in community-engaged research and practice to improve access to preventive health services. Methods This study used grounded theory and participant observation approaches to identify lessons learned from a community-engaged research project to improve cancer screening rates for Indigenous women with an intellectual and/or developmental disability (IDD). Audio recordings of meetings with a community advisory board (AB) were analyzed with an inductive coding approach, and results were member checked with AB members. The AB members (N = 8) were involved in statewide Indigenous health, cancer, and disability activities. Six of the eight AB members identified as Indigenous. Results Key themes highlighted within the Indigenous research framework included reflection, relationship building, project planning, and project execution. Results of this phase of the research project highlight the importance of codesigning research projects with Indigenous communities. Conclusion The findings have limited transferability to other research contexts. However, this study highlights the need for future research on best practices for occupational therapists to participate in community-engaged research projects to address health disparities in underserved populations, such as Indigenous women with IDD.

Community-based participatory research (CBPR) has been documented as an effective approach to research with underserved communities, particularly with racial and ethnic minority groups. However, much of the literature promoting the use of CBPR with underserved communities is written from the perspective of the researchers and not from the perspective of the community partner. The purpose of this article is to capture lessons learned from the community partners&rsquo, insight gained through their experiences with CBPR. A multi-investigator consensus method was used to qualitatively code the transcripts of a CBPR story-telling video series. Seven major themes were identified: (1) expectations for engaging in research, (2) cultural humility, (3) respecting the partnership, (4) open communication, (5) genuine commitment, (6) valuing strengths and recognizing capacities, and (7) collaborating to yield meaningful results. The themes drawn from the community partner&rsquo, s voice align with the tenets of CBPR advanced in the academic literature. More opportunities to include the community voice when promoting CBPR should be undertaken to help introduce the concepts to potential community partners who may be research cautious.

Adults with intellectual and/or developmental disabilities (IDD) often experience health disparities. To address disparities, Healthy People 2020 includes specific disability and health goals focused on improving health care access. The study’s purpose was to review the literature exploring health care access for adults with IDD to identify opportunities for occupational therapy research and practice. A scoping review was completed of articles discussing health care access among adults with IDD in the United States. Thirty-seven articles met the inclusion criteria. Results are framed using the ecology of human performance theory identifying person and environmental issues affecting health care access of adults with IDD. Opportunities exist for occupational therapy to improve participation and health of adults with IDD through engaging in research and practice efforts addressing health care access. Occupational therapy could develop interventions to establish skills and abilities and recommend changes to the health care environment.

Many adults with intellectual and/or developmental disabilities (IDD) can access health and long-term services and supports (LTSS) through Medicaid. States are reforming their Medicaid LTSS programs from a fee-for-service model to a Medicaid managed LTSS (MLTSS) approach, anticipating improved quality of care and reduced costs, although there is limited evidence of MLTSS effectiveness. This study's objective was to contribute to the growing MLTSS research literature by describing MLTSS implementation in Kansas for adults with IDD. Thirty-one stakeholders completed in-depth semi-structured interviews, representing state or regional groups, service coordination providers, and family caregivers. Findings identify key aspects of the Centers for Medicare and Medicaid Services' new MLTSS regulations in the design and implementation of MLTSS programs.

The United States is experiencing growth in populations from culturally diverse backgrounds. Studies suggest that Latinx and American Indians experience chronic conditions such as cancer, heart disease, and diabetes in greater numbers than whites. Literature also suggests that Latinx and American Indian families play a significant role as informal caregivers for loved ones with chronic illness. However, little information is available about interventions to assist these patient-family caregiver dyads cope. The purpose of this systematic review is to synthesize published studies about psychosocial interventions developed or adapted for Latinx and American Indian care dyads in order to determine: (1) the benefits of these interventions; (2) their distinguishing features or adaptations, and; (3) recommendations for future intervention development. The protocol for this review was registered in advance with the International Prospective Register of Systematic Reviews (PROSPERO). We searched the databases CINAHL, PsycINFO, MEDLINE, and PubMeb using MeSH-derived keywords developed in consultation with a research librarian. Studies were included/excluded based upon pre-specified criteria. Three-hundred thirty-five records were identified, screened by the research team, and tracked according to PRISMA guidelines. After removing duplicates (n=9), studies that did not pertain to the conditions of interest (n=13), and studies that did not meet inclusion criteria (n=305), eight studies remained. Relevant information was abstracted from the final studies and synthesized by the research team. The majority of interventions for these populations are in cancer. Findings about benefits are largely inconclusive. Adaptations include a focus on cultural contexts, as well as culturally-based strengths, caregiving norms, and values.

Over 9 million people are incarcerated in jail each year, but physical activity has not been assessed among incarcerated populations. Measuring physical activity in the jail setting is complicated as current physical activity measurement tools are not designed for use inside jail facilities. Therefore, we adapted an evidence-based physical activity measurement tool, the System for Observing Play and Recreation in Communities (SOPARC), to assess physical activity within a jail facility. SOPARC was designed to obtain observational information on physical activity of individuals. The study team created a protocol for SOPARC for use in jail facilities. Unlike the original SOPARC, access to recreation time in jail required prior scheduling. Target areas were unnecessary as recreation spaces were enclosed. The adapted SOPARC protocol for jails included start and end times, the number of individuals that attended, and recreation time users&rsquo, physical activity levels, footwear, outerwear, uniform color, and use of mobility assistive devices. The use of SOPARC in the jail setting requires adaptation to adequately capture physical activity data among incarcerated individuals. Accurately measuring physical activity among incarcerated individuals and the environment in which they are active may allow for future development and testing of physical activity interventions in jail facilities.

Inclusive research is an approach in which individuals with intellectual and/or developmental disabilities (IDD) are included as co-researchers throughout the research processes, and has demonstrated benefits for people with IDD. Because inclusive research is still not common within disability research, it is important for research teams to provide reflections and lessons learned to encourage future inclusive approaches. This paper provides case studies of two research projects completed in collaboration with adults with IDD using Photovoice as an approach that can increase access to the research process for co-researchers with IDD. Drawing upon previously defined inclusive research criteria, we reflect on lessons learned and challenges. Inclusive research requires time, flexibility, shared power, clear communication, and cultural humility. Across both studies, we discuss the importance of clear communication with Institutional Review Boards and collaboration with the extended support networks of individuals with IDD. We reflect on how the accessible nature of Photovoice supports inclusive research teams to combine the strengths of co-researchers with IDD and academically trained researchers, such that the knowledge production process is shifted to co-researchers with IDD.

Background Adults with intellectual and/or developmental disabilities (IDD) experience health inequities, and those who also identify as a member of an ethnic minority group face additional health inequities. In the United States, a majority of adults with IDD continue to be supported by family caregivers making their health equity also important. The purpose of this study was to explore how Native American adults with IDD and their family caregivers experience health and wellness. Method This community-engaged research was guided by a Community Advisory Board (CAB) with study participants completing a Photovoice project. Results Participants identified individual, family and community level influences on health and wellness including the importance of participation in meaningful activities and connection to culture. Conclusions In order to address health inequities, more research is needed to understand health and wellness from the unique perspectives of individuals with IDD and those from racial and ethnic minority groups.

This chapter provides the epidemiology of behavioral disorders in American Indian/Alaska Native (AI/AN) populations, including mental disorders, alcohol/drug disorders, disabilities, and co-occurring disorders. The chapter also emphasizes both risk and protective factors and highlights some of the successful behavioral health prevention and treatment strategies. The chapter concludes by discussing implications for behavioral health for AI/AN including future directions for research, services, programs, and policy.

A majority of individuals with intellectual and developmental disabilities need the support of a family caregiver. In the USA, more states are transitioning to a managed care model to provide long-term services and supports (LTSS) and family caregivers are vital partners in the successful management of LTSS. This study's purpose is to illustrate the lived experience of receiving LTSS in a managed care model from the family caregiver perspective. In-depth semi-structured interviews were completed with 16 caregivers in four states with Medicaid managed LTSS (MLTSS). The themes include the importance of the family caregiver as supported and active partners in the provision of MLTSS, the family caregiver experiences with care coordination and access to services in MLTSS, and the family caregivers’ overall impression of MLTSS. Results indicate caregiver advocacy is critical to coordinating needed MLTSS and family support services help caregiver's maintain their vital role in the MLTSS system. Access to services and care coordination in MTLSS varies depending on state of residence. Some caregivers experienced less flexibility in the provision of services and supports and limited access to services making it more complicated for them to feel supported in their caregiving role. Care coordination in MLTSS was largely seen as paperwork processing function. Family caregivers can provide a wealth of knowledge from lived experiences on best practices for MLTSS. Given the move to more home and community-based services, the role of the family caregiver as an active partners in MLTSS will remain the reality for many individuals with IDD. Family caregivers are a key component in MLTSS and more needs to be done to encourage their involvement in the design and oversight of MLTSS. More research is needed to explore best practices for effective stakeholder engagement in the provision of MLTSS.

The aging of the United States population has led to an increase in the prevalence of Alzheimer’s Disease and Related Dementias (ADRD). Many individuals with ADRD receive care from family members and friends who, themselves, experience poor health outcomes. ADRD family caregivers from diverse backgrounds are frequently underserved by health and social service systems. However, research suggests that diverse caregivers possess culturally-based strengths that serve as protective factors against poor outcomes. This presentation reports findings from a study to develop and validate a community assessment of the needs, assets, and resources of rural Latinx and Native American ADRD family caregivers. Initial assessment items were based upon validated measures developed for diverse ADRD and comparable caregiver populations. A Delphi process was used to obtain ratings from a 9-member expert panel (ADRD policy makers, providers, and family caregivers) about the degree to which the assessment was: (1) inclusive of different cultural groups; (2) respectful of cultural values and norms; (3) comprehensive with respect to needs, assets, and resources, and; (4) relevant to the lived experiences of diverse rural caregivers. Experts also provided qualitative feedback about modifying phrases to make the assessment more relevant to diverse respondents, removing sections, and adding items and response options to better reflect rural life. After two formal rounds of review and multiple iterations, between 77% and 100% of experts agreed that all sections of the assessment met criteria. Findings highlight the benefits of a systematic process for developing and validating community assessments for diverse, rural populations.

BACKGROUND AND PURPOSE: This community-engaged study aims to adapt and feasibility test a breast and cervical cancer education program for Native American (NA) women with disabilities. This presentation reports on the formative work leading to a program for feasibility testing. Intellectual and developmental disabilities (IDD) are disabilities that are diagnosed in childhood and involve limitations in intellectual functioning and/or adaptive behaviors. Women with IDD are less likely to receive breast and cervical cancer screenings than the general population of women in the U.S. Women with IDD who identify as racial/ethnic minorities are less likely to receive recommended preventive health screenings, like cancer screenings. Further, the general population of NA women in the U.S. are less likely to receive cancer screenings. The cancer education program aims to address inequities in cancer screenings for NA women with IDD. METHODS: The university teams worked with HOPI Cancer Support Services and Tucson Indian Center to adapt the cancer education program with input from NA women with IDD, caregivers, service providers, and community leaders. The program was refined in focus groups with health and disability services providers (n=12), partner site program staff (n=12), caregivers (n=12), and NA women with IDD (n=12). RESULTS: Focus groups offered input on program structure and content, including the program name. Participants contributed modifications to trauma-informed features, the program’s use of imagery and storytelling, and methods for hybrid virtual/telephonic and in- person program delivery. Key input included the need to incorporate: sites’ existing health education staff and resources into the program; culturally relevant imagery and language; engaging activities for the women to learn about their anatomy and about cancer screenings; and caregiver education. Participants noted the importance of engaging NA women with IDD and/or cancer survivors in delivering the educational program. They also encouraged the research team to emphasize the benefits of early detection of cancer in order to reduce long-term morbidity and mortality. CONCLUSIONS: Engaging community in the cultural adaptation of an evidence-based breast and cervical cancer curriculum generates a program that is responsive to and builds on community expectations, needs, and existing infrastructure. The team will test the feasibility of the program by assessing recruitment and retention, and exploring preliminary program outcomes. Citation Format: Julie S. Armin, Heather J. Williamson, Janet Rothers, Julie Baldwin, Marissa Adams, Myka Becenti, Andria Begay, Tara Chico- Jarillo, Jennifer Etcitty, Michele Lee, Leticia Lelli, Bailey Lockwood, Celeste Núñez, Samantha Sasse, Neida Rodriguez. Refining a breast and cervical cancer screening program for Native American women with disabilities [abstract]. In: Proceedings of the AACR Virtual Conference: Thirteenth AACR Conference on the Science of Cancer Health Disparities in Racial/Ethnic Minorities and the Medically Underserved; 2020 Oct 2-4. Philadelphia (PA): AACR; Cancer Epidemiol Biomarkers Prev 2020;29(12 Suppl):Abstract nr PO-026.

Marginalized communities have a documented distrust of research grounded in negative portrayals in the academic literature. Yet, trusted partnerships, the foundation for Community-Based Participatory Research (CBPR), require time to build the capacity for joint decision-making, equitable involvement of academically trained and community investigators, and co-learning. Trust can be difficult to develop within the short time between a funding opportunity announcement and application submission. Resources to support community- and academic-based investigators&rsquo, time to discuss contexts, concerns, integration of expertise and locally acceptable research designs and data collection are limited. The National Institutes of Health (NIH) funded Center for American Indian Resilience and the Southwest Health Equity Research Collaborative have implemented an internal funding mechanism to support community and academic-based investigators&rsquo, travel cost and time to discuss complementary areas of interest and skills and to decide if moving forward with a partnership and a collaborative grant proposal would be beneficial to the community. The rationale and administration of this Community-Campus Partnership Support (CCPS) Program are described and four examples of supported efforts are provided. Centers and training programs frequently fund pilot grants to support junior investigators and/or exploratory research. This CCPS mechanism should be considered as precursor to pilot work, to stimulate partnership building without the pressure of an approaching grant application deadline.

Background. Translational research seeks to build bridges between research and practice to address public health issues efficiently and effectively. The purpose of this article was to evaluate a newly formed institute that provided graduate students and adolescent behavioral health community professionals with a translational research service-learning opportunity through the creation of a community–university mentoring partnership. Goals of the team-based research mentorship approach included (1) providing students the skills for implementing translational research, (2) providing research opportunities for community agencies to enhance operations and to encourage ongoing research involvement, and (3) developing relationships between university faculty and community agency professionals for further research collaborations. Method. The Institute used the National Institute on Drug Abuse’s Mentoring Mosaic to select a diverse group of community and academic mentors. The research mentorship experience of the initial cohort was evaluated based on the Research Mentorship Conceptual Framework and Self-Assessment Tool. Results. As a direct result of the research mentorship, outcomes for the academic and community mentors and scholars (i.e., those seeking a graduate certificate) included improved working relationships/networking and research experience. Through experiential learning, scholars also discovered career trajectory clarity, the need for community collaboration in research, opportunities for continuing professional development, a greater understanding of public health competencies and how they align with community-based research, and skill development in best practices for translational research. Conclusion. The team mentoring approach is a form of pedagogy that holds promise to enhance translational research and community-based research efforts while developing public health competencies.

Individuals with intellectual and developmental disabilities (IDD) in the U.S. predominantly live with their family caregivers. As care delivery and support systems vary widely globally, consideration of caregiver outcomes specifically in the U.S. context is needed. A systematic literature review was conducted to identify U.S. family caregiver outcomes and their association with existing services and supports for family caregivers of adults with IDD. Twenty-four articles were compiled using the PubMed, Web of Knowledge, PsychInfo, and CINAHL databases. Studies report economic, mental, and physical health outcomes from caregiving roles. The need for comprehensive caregiver assessment is discussed. Understanding and responding to the changing needs of family caregivers is vital to the U.S. disability service system to effectively prioritize formal resources and services.

Background: In developing countries, people with disabilities (PWD) are more likely to have unequitable access to health care services than their counterparts without disabilities. Access to health care is a multidimensional concept and PWD experience various barriers to use health care. This quantitative study explored the predictors and determents of access to health care for PWD in an Iranian context. Methods: Data were collected from a cross sectional study conducted in Tehran in 2017. A total of 403 adults with physical and/or intellectual disabilities were selected using census method. The data on PWD were collected from 14 rehabilitation centers affiliated to Welfare Organization and Red Crescent Organization. The self–report World Health Organization Disability Assessment Schedule 2.0 (WHODAS 2.0) was used to collect data on disability status. T test, ANOVA, and multiple linear regressions were used to determine factors influencing access to health care for PWD. Significance level was set at 5%. Also, SPSS software version 20.0 was used for data analysis. Results: The mean of access to health care among people with intellectual disabilities (mean: 61.77, 95% confidence interval (CI):59.20, 64.35) was significantly lower than their counterparts with physical disabilities (Mean: 67.97, 95% CI: 65.26, 70.69). The results of multiple linear regression analysis showed that in the affordability dimension, type of disability, marital status, and supplemental health insurance could predict access to health services for PWD. In availability dimension, only location predicted the outcome variable significantly. Also, location and type of disability were considered to be potential predictors of access to health services in acceptability dimension. Conclusion: The results indicate that various factors can limit access to health services for PWD. To achieve universal health coverage, vulnerable groups and their needs should be identified to increase equitable access to health care services. Also, the health care system should pay more attention to demographic differences when planning and providing affordable and acceptable health care for PWD. Finally, the role of the government as the heath stewardship is vital to promote health care access for PWD in Iran.

Community–university partnerships are frequently used to enhance translational research efforts while benefiting the community. However, challenges remain in evaluating such efforts. This article discusses the utility of applying the contextual and interactive model of community–university collaboration to a translational research education program, the Institute for Translational Research in Adolescent Behavioral Health, to guide programmatic efforts and future evaluations. Institute stakeholders from academia and the community completed in-depth interviews querying their expectations and experiences in this collaboration. Key quotes and themes were extracted and analyzed based on the constructs within the 3 phases of the model. The findings note specific themes for future evaluations. Overall, the contextual and interactive model of community–university collaboration proved a useful framework to guide the process evaluation of the Institute. Findings suggest possible strategies for the successful development, evaluation, and sustainability of community–university partnerships.

Syndemic Theory posits that an understanding of the HIV/AIDS pandemic can only be gained by examining the dynamic interaction of the disease with other health problems (e.g., tuberculosis, sexually transmitted infections, malnutrition, substance abuse), in the context of social and structural conditions such as poverty, unequal access to resources, violence, stigma, etc. While the theory has been extensively used to guide research, it has not been widely utilized as a training tool. This article presents a model for the use of Syndemic Theory as a framework for the training and mentorship of researchers and practitioners, particularly from underrepresented groups interested in HIV/AIDS prevention and treatment among ethnic minorities.

An innovative approach to research education that integrates the theory and principles of implementation science, participatory research, and service learning in the area of adolescent behavioral health is presented. Qualitative interviews and surveys of program participants have been conducted to assess the program's curricula, service-learning partnerships, student (scholar) satisfaction, and views of community partnerships and academic mentors. The Institute has experienced the successful completion of its first and second cohorts and enrollment of a third cohort of scholars. Community partners are utilizing results of service-learning projects to influence agency operations. Institute scholars have identified research and service learning experiences as key factors in the decision to apply to the Institute graduate certificate program. The availability of tuition support is identified as valuable but not ranked as the most important reason for scholar interest in the program. Academic mentors report positive relationships with community agencies. Future iterations of the program will expand options for distance learning and alternatives to traditional graduate education for community-based scholars. Community partner agency capacity for participation is expected to change over time. Methods are being identified to both sustain existing partnerships and develop new community partnership relationships.

Date Presented 4/1/2017 States are reforming their Medicaid programs to a managed care approach. Opportunities exist for the field of occupational therapy to help inform current and future managed care reform efforts. Occupational therapists can contribute to encouraging stakeholder engagement and informing family caregiver support efforts. Primary Author and Speaker: Heather Williamson Contributing Authors: Elizabeth Perkins, Amie Lulinski, Mary Armstrong, Julie Baldwin, Bruce Levin, Oliver Massey

Statement of the problem Children’s mental health researchers have made great gains in demonstrating the effectiveness of interventions that result in desirable outcomes for children with behavioral health issues. However, despite proven efficacy, empirically supported treatments are not widely adopted in community practice settings. There is a growing body of evidence in support of guiding principles for participatory research and, at its core is the development of academic-community partnerships for more effective health disparities research.