Reaching "The Other Half": Teacher Referral Increases Inclusivity in Intervention Research for Neurodivergent School-Age Children.

OBJECTIVE: Researchers employed two recruitment strategies in a school-based comparative effectiveness trial for students with a diagnosis of attention-deficit/hyperactivity disorder (ADHD) or autism. This study assessed the: 1) effectiveness of school-based referrals for identifying students meeting diagnostic criteria and 2) impact of eliminating requirements for existing diagnoses on recruitment, sample characteristics, and intervention response. METHOD: Autistic students and students with ADHD in schools serving underresourced communities were recruited for an executive functioning (EF) intervention trial over 2 years. In Year 1, school staff nominated students with previous diagnoses. In Year 2, school staff nominated students demonstrating EF challenges associated with ADHD or autism; previous diagnosis was not required. Study staff then confirmed diagnoses. RESULTS: More students were included in Year 2 (N = 106) than Year 1 (N = 37). In Year 2, 96% of students referred by school staff met diagnostic criteria for ADHD or autism, 53% of whom were not previously diagnosed. Newly identified students were less likely than previously diagnosed students to be receiving services and, for those with ADHD, were more likely to speak primarily Spanish at home. Previously diagnosed and newly identified students did not differ on other demographic variables or intervention response. Caregivers of previously diagnosed students reported more symptoms than caregivers of newly identified students for both diagnostic groups. Previously diagnosed students with ADHD had more researcher-rated symptoms than newly identified students. CONCLUSIONS: Recruitment for an intervention study using behavior-based referrals from school staff enhanced enrollment without compromising the sample's diagnostic integrity and engaged children who otherwise would have been excluded.

Evaluation of telemental health services for people with intellectual and developmental disabilities: protocol for a randomized non-inferiority trial.

BACKGROUND: Roughly 40% of those with intellectual/developmental disabilities (IDD) have mental health needs, twice the national average. Unfortunately, outpatient mental health services are often inaccessible, increasing reliance on hospital-based services. While telemental health services hold potential to address this gap, little is known about the effectiveness of telemental health for the diversity of persons with IDD, especially as it relates to crisis prevention and intervention services. Accordingly, the aims of this study are to: (1) compare telemental health versus in-person crisis prevention and intervention services among people with IDD; and (2) understand if outcomes vary across subpopulations, in order to identify potential disparities. METHODS: This study will take place within START (Systemic, Therapeutic, Assessment, Resources, and Treatment), a national evidence-based model of mental health crisis prevention and intervention for people with IDD. A total of 500 youth and adults, located across nine states, will be randomized 1:1 to telemental health vs. in-person. Participant inclusion criteria are ages 12-45 years, living in a family setting, and newly enrolled (within 90 days) to START. Outcomes will be assessed, using a non-inferiority design, for up to 1 year or until discharge. The intervention is comprised of four components: (1) outreach; (2) consultation/coping skills; (3) intake/assessment; and, (4) 24-hour crisis response. The in-person condition will deliver all components in-person. The telemental health condition will deliver components 1 & 2, via telephonic or other communication technology, and components 3 & 4 in-person. Outcomes include mental health crisis contacts, mental health symptoms, emergency psychiatric service use, perceived quality of mental healthcare, and time to discharge. DISCUSSION: To our knowledge, this will be the first trial of a telemental health crisis program for the IDD population. The study will be executed by an interdisciplinary team of experts that includes persons with lived experience of disability. Understanding the benefits of specific telemental health methods has important implications to the design of interventions. This telemental health study offers promise to address disparities in access to mental health care for people with IDD across diverse racial, ethnic, linguistic, and cultural groups. TRIAL REGISTRATION: Clinicaltrials.gov ( #NCT05336955 ; Registration Date: 4/20/2022).

Telehealth information and communication technology access for family caregivers of people with intellectual and developmental disabilities and mental health needs.

BACKGROUND: Telehealth is increasingly used to deliver mental health services. However, the potential benefits of telehealth for people with intellectual and developmental disabilities and mental health needs (IDD-MH) may not be fully realized. This study addresses gaps in knowledge about access to information and communication technologies (ICTs) for individuals with IDD-MH from the perspective of their family caregivers. OBJECTIVE: What factors are associated with access to ICTs among family caregivers of people with IDD-MH who use START services? METHODS: Retrospective analysis of cross-sectional interview data gathered for START use at the onset of COVID-19. START is a crisis prevention and intervention evidence-based model for people with IDD-MH implemented across the USA. To assess needs during COVID-19, START coordinators conducted interviews with 1455 family caregivers between March and July 2020. A multinomial regression model examined correlates of ICT access, as indicated by an index (poor, limited, and optimal access). Correlates included the level of IDD, age, gender, race, ethnicity, rural setting of the person with IDD-MH, and caregiver status. RESULTS: Age (ages 23-30 years) and sole caregiver status were significantly associated with limited access (both p ≤ .001). Age (ages 23-30 years and ≥31 years, p < .001), race (Black or African American, p = .001), ethnicity (Hispanic, p = .004), and sole caregiver status (p < .001) were significantly associated with poor access. CONCLUSIONS: Disparities existed in ICT access for adults, specific racial/ethnic groups, and sole caregiver households. Healthcare policy related to telehealth must consider how ICT access can be equitable for all users with IDD-MH.

Increasing Ancestral Diversity in Systemic Lupus Erythematosus Clinical Studies.

Non-White people are more likely to develop systemic lupus erythematosus (SLE) yet are underrepresented in SLE clinical trials. The efficacy and safety of drugs may be influenced by ancestry, and ancestrally diverse study populations are necessary to optimize treatments across the full spectrum of patients. However, barriers to entry into clinical trials are amplified in non-White populations. To address these issues, a conference was held in Bethesda, Maryland, from October 15-16, 2019, entitled "Increasing Ancestral Diversity in Systemic Lupus Erythematosus Clinical Studies: Overcoming the Barriers." Conference participants included people with lupus, lupus physicians, lupus clinical trialists, treatment developers from biotechnology, social scientists, patient advocacy groups, and US government representatives (The Office of Minority Health, Centers for Disease Control and Prevention, National Institutes of Health, and the Food and Drug Administration). For all these groups, the organizers of the conference purposefully included people of non-White ancestry. Decreased participation of non-White SLE patients in clinical research was evaluated through historical, societal, experiential, and pragmatic perspectives, and several interventional programs to increase non-White patient participation in SLE and non-SLE research were described and discussed. The presentations and discussions highlighted the need for changes at the societal, institutional, research team, referring physician, and patient education levels to achieve equitable ancestral representation in SLE clinical studies.

Identifying People With Intellectual and Developmental Disabilities in National Population Surveys.

Public health and policy planning for adults with intellectual and developmental disabilities (IDD) is imperiled by the lack of ongoing national surveillance data on prevalence and health status. In 2018, the Administration on Intellectual and Developmental Disabilities appointed a workgroup of representatives from key federal agencies and national experts to recommend strategies to improve prevalence estimates and health surveillance for people with IDD. This article presents the workgroup findings on the availability of prevalence and health surveillance data for adults with IDD and suggested items that could identify respondents with IDD on national surveys with special attention to modifications in the National Health Interview Survey. We identify core constructs that must be measured to identify sample members with IDD in population surveys, and additional constructs which, if measured, would support more comprehensive identification of sample members and enhance ongoing surveillance of the health status, outcomes, and unmet needs of this population. We conclude with a brief review of methodological considerations to improve IDD national surveillance including cultural and linguistic sensitivity and the inclusion of U.S. territories in national surveillance protocols.

An Innovative Simulation-based Community-engaged Intervention for Training Research Assistants in Culturally Appropriate Informed Consent.

BACKGROUND: Enrolling under-represented groups in biomedical research remains challenging owing to limited health literacy, historic medical abuses, and mistrust. Addressing such barriers requires scrutiny of informed consent processes and training of research assistants (RAs). Applying simulation methods that are well-established in medical education, Simulation-based Community-engaged Research Intervention for Informed Consent Protocol Testing and Training (SCRIIPTT) engages community members as community advisors (CAs) to train RAs in implementing culturally appropriate approaches, such as addressing difficult issues related to race and power dynamics, into the informed consent training process. OBJECTIVES: To present SCRIIPTT's development, implementation, and preliminary findings. METHODS: Over 12 months, our community-academic partnership 1) introduced SCRIIPTT to the greater community using the Truth & Reconciliation Model, which acknowledges the wrongs of research and offers an apology; 2) deepened understanding of community concerns; 3) developed the intervention; 4) conducted a pilot; and 5) disseminated findings. RESULTS: SCRIIPTT included a comprehensive training manual, scenarios for simulated informed consent encounters, and a 37-item checklist to measure performance. Outcomes include CA and RA satisfaction surveys, and RA performance rating. The checklist adequately measured observable behaviors. RAs reported important gains in knowledge, self-confidence, and cultural competence in conducting informed consent. CAs reported positive experiences, being fully engaged and valued as members of the research team and participants during simulation encounters. CONCLUSIONS: This pilot study demonstrated the feasibility of SCRIIPTT, with preliminary evidence of effectiveness and acceptability. SCRIIPTT offers an innovative approach for community engagement in research training and advancing the skills of RAs in culturally appropriate informed consent.

Enrolling Minority and Underserved Populations in Cancer Clinical Research.

Research suggests that community involvement is integral to solving public health problems, including involvement in clinical trials-a gold standard. Significant racial/ethnic disparities exist in the accrual of participants for clinical trials. Location and cultural aspects of clinical trials influence recruitment and accrual to clinical trials. It is increasingly necessary to be aware of defining characteristics, such as location and culture of the populations from which research participants are enrolled. Little research has examined the effect of location and cultural competency in adapting clinical trial research for minority and underserved communities on accrual for clinical trials. Utilizing embedded community academic sites, the authors applied cultural competency frameworks to adapt clinical trial research in order to increase minority participation in nontherapeutic cancer clinical trials. This strategy resulted in successful accrual of participants to new clinical research trials, specifically targeting participation from minority and underserved communities in metropolitan Washington, DC. From 2012 to 2014, a total of 559 participants enrolled across six nontherapeutic clinical trials, representing a 62% increase in the enrollment of blacks in clinical research. Embedding cancer prevention programs and research in the community was shown to be yet another important strategy in the arsenal of approaches that can potentially enhance clinical research enrollment and capacity. The analyses showed that the capacity to acquire cultural knowledge about patients-their physical locales, cultural values, and environments in which they live-is essential to recruiting culturally and ethnically diverse population samples.

The alliance to reduce disparities in diabetes: infusing policy and system change with local experience.

This supplement provides a comprehensive and in-depth examination of proven clinical-community health strategies employed by the Alliance to Reduce Disparities in Diabetes, across five sites located in diverse geographic regions of the United States, including a tribal community. Alliance projects in these communities focused on African Americans, Hispanics/Latinos, and American Indians as priority populations. Each project was implemented with an understanding that there are cultural norms, community characteristics, and health care system challenges that require sustained multicomponent approaches to ameliorate factors that exacerbate poor disease management and health outcomes. The articles increase understanding of what is required to implement evidence-based approaches shaped by local experiences in order to meet the needs of diverse communities affected by diabetes. Lessons learned have generic elements that can be used in other priority populations and settings.

Promoting a new research agenda: health disparities research at the intersection of disability, race, and ethnicity.

BACKGROUND: Differences in access to and receipt of health care have been extensively documented across racial and ethnic groups. Similarly, a growing body of research has documented disparities between people with and without disabilities in obtaining needed health care. However, our understanding of the intersection of disability with race and ethnicity in health care is very limited. OBJECTIVES: The purpose of this supplement is to begin to bridge the gap between research on racial and ethnic health disparities and research on disability-related health disparities. RESULTS: The papers in this supplement examine evidence of racial and ethnic disparities within various populations of people with disabilities, and explore unique issues at the intersection of disability, race, and ethnicity. CONCLUSIONS: The studies in this issue provide a starting point, and are intended to serve as an impetus for building a more robust literature on health care issues impacting the expanding segment of United States population that both experience disability and belong to racial and ethnic groups other than non-Hispanic white.

Parallel tracks: reflections on the need for collaborative health disparities research on race/ethnicity and disability.

Public policy driving health disparities research has overwhelmingly focused on racial and ethnic populations other than non-Hispanic whites; these groups have historically been and continue to be disproportionately impacted by health disparities. Only recently has public policy focused on the inclusion of people with disabilities as a distinct health disparities population. These 2 areas of research have traveled parallel paths with little recognition of the health disparities that affect people at the intersection of race, ethnicity, and disability. This commentary reflects on the history, foci, and current status of these 2 separate tracks of health disparities research. We conclude the commentary with suggestions for merging the 2 tracks to develop research that addresses both disability as well as race and ethnicity.

Barriers to health care among people with disabilities who are members of underserved racial/ethnic groups: a scoping review of the literature.

BACKGROUND: Understanding barriers to health care access experienced by people with disabilities who are members of underserved racial/ethnic groups is key to developing interventions to improve access. OBJECTIVE: To conduct a scoping review of the literature to examine the published literature on barriers to health care access for people with disabilities who are members of underserved racial/ethnic groups. DATA SOURCES: Articles cited in MEDLINE, PsycINFO, and CINAHL between the year 2000 and June 19, 2013. In addition, table of contents of 4 journals and the reference lists of the included article were reviewed for potentially relevant titles. STUDY SELECTION AND EXTRACTION: Studies examining barriers to health care access among adults aged 18-64 with disabilities who are members of an underserved racial/ethnic group were included. Two reviewers screened abstracts, screened each full-text article and extracted data, and discrepancies were resolved by consensus. RESULTS: Ten studies were identified that met all inclusion criteria. The most frequently described barriers were uninsurance, language, low education level, and no usual source of care. Barriers to health care access related to race or ethnicity (6 studies) and disability (1 study) were observed less often than those related to socioeconomic status or health care systems factors (9 studies). CONCLUSIONS: Our findings reflect a critical gap in the literature. Greater attention is needed to subgroup differences including race, ethnicity, and culture within the population of people with disabilities.

Psychometric evaluation of a cultural competency assessment instrument for health professionals.

BACKGROUND: Few valid and reliable measures exist for health care professionals interested in determining their levels of cultural and linguistic competence. OBJECTIVE: To evaluate the measurement properties of the Cultural Competence Health Practitioner Assessment (CCHPA-129). METHODS: The CCHPA-129 is a 129-item web-based instrument, developed by the National Center for Cultural Competence. Responses on the CCHPA -129 were examined using factor analysis; Rasch modeling; and differential item functioning across race, ethnicity, sex, and profession. SUBJECTS: A total of 2504 practitioners, including 1864 nurses (RN/LPN/BSN); 341 clinicians (PA/NP); and 299 physicians (MD/DO), who completed the CCHPA-129 online between 2005 and 2008. RESULTS: Three factors representing domains of Knowledge, Adapting Practice, and Promoting Health for culturally and linguistically diverse populations accounted for 46% of the variance. Among Knowledge factor items, 53% (23/43) fit the Rasch model, item difficulties ranged from -1.01 logits (least difficult) to +1.11 logits (most difficult), separation index (SI) 13.82, and Cronbach's α 0.92. Forty-seven percent (21/44) Adapting Practice factor items fit the model, item difficulties -0.07 to +1.11 logits, SI 11.59, Cronbach's α 0.88; and 58% (23/39). Promoting Health factor items fit the model, item difficulties -1.01 to +1.38 logits, SI 22.64, Cronbach's α 0.92. Early evidence of validity was established by known groups having statistically different scores. CONCLUSIONS: The 67-item CCHPA-67 is psychometrically sound. This shorted instrument can be used to establish associations between practitioners' cultural and linguistic competence and health outcomes as well as to evaluate interventions to increase practitioners' cultural and linguistic competence.

A collaborative mental health research agenda in a community of poor and underserved Latinos.

The goal of this project was to engage community members and grassroots organizations in a discussion regarding perceived mental health needs and priorities of the population of underserved Latinos in Montgomery County, Maryland. Community-based participatory research was used to establish structures for participation and to design studies that effectively address local mental health needs. Four focus groups with 30 Latino lay health promoters and 20 key informant interviews were conducted to ascertain communal mental health needs and priorities. The main issues that emerged included mental health stigma, consequences of immigration-related stress, violence and alcoholism, and concerns about psychotropic medications. Ideas to address these issues and foster wellness through research were generated during a community-based workshop that included consumers, primary care and mental health clinicians, researchers, and representatives of local organizations and federal agencies. The product of this process was an implementable mental health research agenda, which is presented and discussed.