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Data repositories, particularly those storing data on vulnerable populations, increasingly need to carefully consider not only what data is being collected, but how it will be used. As such, the Autism Intervention Research Network on Physical Health (AIR-P) has created the Infrastructure for Collaborative Research (ICR) to establish standards on data collection practices in Autism repositories. The ICR will strive to encourage inter-site collaboration, amplify autistic voices, and widen accessibility to data. The ICR is staged as a three-tiered framework consisting of (1) a request for proposals system, (2) a REDCap-based data repository, and (3) public data dashboards to display aggregate de-identified data. Coupled with a review process including autistic and non-autistic researchers, this framework aims to propel the implementation of equitable autism research, enhance standardization within and between studies, and boost transparency and dissemination of findings. In addition, the inclusion of a contact registry that study participants can opt into creates the base for a robust participant pool. As such, researchers can leverage the platform to identify, reach, and distribute electronic materials to a greater proportion of potential participants who likely fall within their eligibility criteria. By incorporating practices that promote effective communication between researchers and participants, the ICR can facilitate research that is both considerate of and a benefit to autistic people.
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Transtorno Autístico , Humanos , Comportamento Cooperativo , Pesquisa Biomédica/métodos , Pesquisa Biomédica/normas , Coleta de Dados/métodosRESUMO
PURPOSE: To describe positive mental health, or "flourishing," and self-reported health trajectories among transition-aged young adults (TAYA) with developmental/learning and physical disabilities over a 12-year period, utilizing a population-based sample. METHODS: This study features a secondary analysis of national data from the Panel Study of Income Dynamics Transition to Adulthood Supplement. The analytic sample included all TAYA with (n = 487) and without (n = 810) disabilities, including developmental/learning disabilities (DD/LD), attention deficit hyperactivity disorder (ADHD), and speech, hearing, and vision impairments who participated in 2017 Transition to Adulthood Supplement data collection (n = 1,297; M age = 24.5, standard deviation = 2.40). We utilized linear mixed modeling to retrospectively describe flourishing and self-reported health trajectories across 12 years among TAYA with and without disabilities between ages 18 to 28, adjusting for demographic and developmental characteristics. RESULTS: Relative to TAYA without disabilities, TAYA with speech [0.10, 0.85] and vision impairments [0.10, 0.92], DD/LD [0.38, 1.11], and ADHD [0.27, 0.97] demonstrated lower flourishing. TAYA with speech [0.07, 0.36] and vision impairments [0.08, 0.38], DD/LD [0.15, 0.411], and ADHD [0.14, 0.93] reported lower health. Relative to TAYA with other disabilities, TAYA with ADHD [0.14, 0.93] and DD/LD [0.01, 0.29] reported lower flourishing and health, respectively. Interaction effects and descriptive analyses revealed distinct patterns of change for TAYA with ADHD. DISCUSSION: TAYA with disabilities report lower flourishing and health, relative to TAYA without disabilities. TAYA with specific disabilities differ in their flourishing and health trajectories. Findings can inform the development of interventions for TAYA with disabilities.
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Transtorno do Deficit de Atenção com Hiperatividade , Deficiências da Aprendizagem , Adulto Jovem , Humanos , Idoso , Adulto , Estudos Retrospectivos , Deficiências da Aprendizagem/complicações , Autorrelato , AprendizagemRESUMO
Autism is a developmental disability that exists across racial, ethnic, linguistic, and socioeconomic boundaries. Unfortunately, the lived experiences of autistic individuals and their families as supported by evidence in the existing literature suggest that culturally and linguistically diverse families' engagement in healthcare and education face a multitude of challenges, particularly during high-stakes meetings and healthcare appointments (e.g., Individualized Education Plan meetings, patient visits, and diagnostic results interpretation meetings). These challenges prevent culturally and linguistically diverse autistic individuals from accessing adequate care. In this paper, we propose solutions to be adopted by healthcare and education systems to address those challenges. First, we urge providers to address the systemic problems that commonly occur during meetings. Second, we propose service providers adopt a cultural and linguistic 'match' process. We recommend asking families about their specific language preferences and ensuring the selection of translators who speak the family's preferred language and dialect. Employing these transformations will require education and healthcare systems to allocate more resources for translation services to enhance the training and recruitment of interpreters and ensure that interpreter-family pairs are provided time for consultation prior to high-stakes meetings. Ultimately, these adaptations to the service provision environment would produce opportunities for translators to act as cultural liaisons and, with time, become trusted partners for families.
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INTRODUCTION: Autistic individuals, now representing one in 36 individuals in the U.S., experience disproportionate physical health challenges relative to non-autistic individuals. The Health Resources and Services Administration's (HRSA) Autism Intervention Research Network on Physical Health (AIR-P) is an interdisciplinary, multi-center Research Network that aims to increase the health, well-being, and quality of life of autistic individuals. The current paper builds on the initial AIR-P Research Agenda (proposed in Year 1) and provides an updated vision for the Network. METHODS: Updates to the Research Agenda were made via the administration of a Qualtrics survey, and disseminated widely to all AIR-P entities, including the Research Node Leaders, Steering Committee, Autistic Researcher Review Board, and collaborating academic and non-academic entities. Network members were tasked with evaluating the Year 1 Research Agenda and proposing additional priorities. RESULTS: Within each Research Node, all Year 1 priorities were endorsed as continued priorities for research on autism and physical health. Specific topics, including co-occurring conditions and self-determination, advocacy, and decision-making, were particularly endorsed. Opportunities for exploratory studies and intervention research were identified across Research Nodes. Qualitative responses providing feedback on additional research priorities were collected. CONCLUSION: The updated AIR-P Research Agenda represents an important step toward enacting large-scale health promotion efforts for autistic individuals across the lifespan. This updated agenda builds on efforts to catalyze autism research in historically underrepresented topic areas while adopting a neurodiversity-oriented approach to health promotion.
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Mental and behavioral health (MBH) visits of children and youth to emergency departments are increasing in the United States. Reasons for these visits range from suicidal ideation, self-harm, and eating and substance use disorders to behavioral outbursts, aggression, and psychosis. Despite the increase in prevalence of these conditions, the capacity of the health care system to screen, diagnose, and manage these patients continues to decline. Several social determinants also contribute to great disparities in child and adolescent (youth) health, which affect MBH outcomes. In addition, resources and space for emergency physicians, physician assistants, nurse practitioners, and prehospital practitioners to manage these patients remain limited and inconsistent throughout the United States, as is financial compensation and payment for such services. This technical report discusses the role of physicians, physician assistants, and nurse practitioners, and provides guidance for the management of acute MBH emergencies in children and youth. Unintentional ingestions and substance use disorder are not within the scope of this report and are not specifically discussed.
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Transtornos Mentais , Transtornos Psicóticos , Transtornos Relacionados ao Uso de Substâncias , Criança , Humanos , Adolescente , Estados Unidos , Emergências , Saúde Mental , Atenção à Saúde , Transtornos Relacionados ao Uso de Substâncias/diagnóstico , Transtornos Relacionados ao Uso de Substâncias/epidemiologia , Transtornos Relacionados ao Uso de Substâncias/terapia , Serviço Hospitalar de Emergência , Transtornos Mentais/diagnóstico , Transtornos Mentais/epidemiologia , Transtornos Mentais/terapiaRESUMO
Mental and behavioral health (MBH) emergencies in children and youth continue to increasingly affect not only the emergency department (ED), but the entire spectrum of emergency medical services for children, from prehospital services to the community. Inadequate community and institutional infrastructure to care for children and youth with MBH conditions makes the ED an essential part of the health care safety net for these patients. As a result, an increasing number of children and youth are referred to the ED for evaluation of a broad spectrum of MBH emergencies, from depression and suicidality to disruptive and aggressive behavior. However, challenges in providing optimal care to these patients include lack of personnel, capacity, and infrastructure; challenges with timely access to a mental health professional; the nature of a busy ED environment; and paucity of outpatient post-ED discharge resources. These factors contribute to prolonged ED stays and boarding, which negatively affect patient care and ED operations. Strategies to improve care for MBH emergencies, including systems-level coordination of care, are therefore essential. The goal of this policy statement and its companion technical report is to highlight strategies, resources, and recommendations for improving emergency care delivery for pediatric MBH.
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Serviços Médicos de Emergência , Transtornos Mentais , Criança , Humanos , Adolescente , Emergências , Transtornos Mentais/diagnóstico , Transtornos Mentais/terapia , Serviço Hospitalar de Emergência , Saúde MentalRESUMO
Mental and behavioral health (MBH) emergencies in children and youth continue to increasingly affect not only the emergency department (ED), but the entire spectrum of emergency medical services for children, from prehospital services to the community. Inadequate community and institutional infrastructure to care for children and youth with MBH conditions makes the ED an essential part of the health care safety net for these patients. As a result, an increasing number of children and youth are referred to the ED for evaluation of a broad spectrum of MBH emergencies, from depression and suicidality to disruptive and aggressive behavior. However, challenges in providing optimal care to these patients include lack of personnel, capacity, and infrastructure, challenges with timely access to a mental health professional, the nature of a busy ED environment, and paucity of outpatient post-ED discharge resources. These factors contribute to prolonged ED stays and boarding, which negatively affects patient care and ED operations. Strategies to improve care for MBH emergencies, including systems level coordination of care, is therefore essential. The goal of this policy statement and its companion technical report is to highlight strategies, resources, and recommendations for improving emergency care delivery for pediatric MBH.
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Serviços Médicos de Emergência , Transtornos Mentais , Humanos , Criança , Adolescente , Emergências , Transtornos Mentais/diagnóstico , Transtornos Mentais/terapia , Serviço Hospitalar de Emergência , Ideação SuicidaRESUMO
Objective Patients with intellectual and developmental disabilities (IDD) experience needle phobia at greater rates than individuals in the general population. Needle phobia deters patients with IDD from receiving routine medical procedures, which impacts their physical health outcomes. The aim of this quality improvement study was to assess the feasibility of a minimal sedation protocol in an outpatient care setting for patients with IDD and needle phobia. Methods The sample included 18 patients characterized as having a diagnosis of IDD only or IDD and needle phobia compared to patients with only a diagnosis of needle phobia. Reasons for referral to intervention included routine lab work, therapeutic drug monitoring, and routine vaccination. The minimal sedation intervention involved intranasal administration of a benzodiazepine (midazolam) by a registered nurse. Outcomes of interest were administration of the sedation and administration of medical orders. Results Nearly a third of patients were children (33.3%, n=6), and 39% of patients were female (n=7). Individuals with IDD (including those both with and without needle phobias) comprised 72.2% of patients (n=13). Half of intervention encounters were successful in both administering the sedation and performing the medical orders (n=9). Among individuals with IDD, 38.4% successfully completed the intervention (n=5). Conclusion This pilot study assessed the feasibility of implementing a minimal sedation protocol in primary care outpatient care settings. The preliminary results suggest that the minimal sedation protocol may improve the uptake of needle-related medical procedures for patients with IDD and/or needle phobia. The minimal sedation protocol should be studied in a larger sample and among multiple outpatient settings to establish effectiveness of the intervention.
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Objective To describe the development process of a patient-centered initiative focused on improving primary care health outcomes of patients with intellectual and developmental disabilities (IDD) and needle-related anxiety using evidence-based practices and novel approaches that can be implemented in outpatient settings. The overall outcome of the program is to increase vaccine uptake and accessibility in the IDD population as well as improve needle-related procedures in primary care settings to be more humane and effective. Methods The development process occurred in the context of a large healthcare system serving a diverse patient population in the U.S. and was led by an expert committee made of an multidisciplinary team of physicians, psychologists, ambulatory and clinic nurses, pharmacists, and anesthesiologists committed to promoting quality healthcare for the IDD population. Committee members were recruited within the healthcare system based on their relevant expertise. The methodology included an iterative and collaborative process that took place over three development phases: ideation and design, literature review and synthesis, and expert engagement. The ideation and design phase included a series of planning meetings among the expert committee, in which committee members identified preliminary concerns based on their expertise in the field and background knowledge on the current procedures related to improving routine care for individuals with IDD and/or needle-related anxiety. The literature review and synthesis phase led to the development of an annotated bibliography of research and clinical guidelines that synthesized findings on needle anxiety in clinical care. The expert engagement phase included all Committee members meeting for a final discussion to establish a tiered approach to utilizing evidence-based strategies that could be implemented across clinics within the healthcare system. Results The multidisciplinary team of experts developed a three-tier system, deployed sequentially as needed. The first tier focuses on training nurses in evidence-based behavioral modification strategies to implement as standard of care. The second tier uses the addition of a distraction device and topical analgesic to reduce anxiety in patients with slightly elevated procedural anxiety. The third tier involves a novel minimal sedation protocol using intranasal midazolam for patients with needle phobia that can be administered in an outpatient setting. Conclusion The Needle Anxiety Program eases the administration of needle-related medical procedures in the primary care setting for patients with IDD and needle-related anxiety. The use of evidence-based practices and a novel minimal sedation protocol for individuals with needle phobia assists in the completion of routine healthcare procedures, such as vaccinations and phlebotomy, in a patient-preferred setting. The purpose of delineating needle-related processes and procedures through the Needle Anxiety Program is to reduce health disparities for patients with IDD and promote uptake of the Needle Anxiety Program in similar healthcare settings.
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Mental and behavioral health (MBH) emergencies in children and youth continue to increasingly affect not only the emergency department (ED), but the entire spectrum of emergency medical services for children, from prehospital services to the community. Inadequate community and institutional infrastructure to care for children and youth with MBH conditions makes the ED an essential part of the health care safety net for these patients. As a result, an increasing number of children and youth are referred to the ED for evaluation of a broad spectrum of MBH emergencies, from depression and suicidality to disruptive and aggressive behavior. However, challenges in providing optimal care to these patients include lack of personnel, capacity, and infrastructure, challenges with timely access to a mental health professional, the nature of a busy ED environment, and paucity of outpatient post-ED discharge resources. These factors contribute to prolonged ED stays and boarding, which negatively affects patient care and ED operations. Strategies to improve care for MBH emergencies, including systems level coordination of care, is therefore essential. The goal of this policy statement and its companion technical report is to highlight strategies, resources, and recommendations for improving emergency care delivery for pediatric MBH.
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Transtornos do Comportamento Infantil , Emergências , Transtornos Mentais , Humanos , Masculino , Feminino , Criança , Adolescente , Transtornos Mentais/terapia , Serviços Médicos de Emergência , Transtornos do Comportamento Infantil/terapia , Pessoal de Saúde , Serviços de Saúde MentalRESUMO
INTRODUCTION: Neurodivergent emerging adults - defined as individuals between the ages of 18 and 30 with intellectual and/or developmental disabilities (e.g., attention-deficit hyperactivity disorder (ADHD), autism, cerebral palsy, learning disabilities, seizures, developmental delays, with or without intellectual impairment) and physical and/or sensory disabilities (e.g., blindness or hearing impairment) - experience poor mental and physical health outcomes. Existing interventions are insufficient because they are not based on the self-reported and developmental needs of this population. METHODS: The current study is an exploratory pilot study that features a multidimensional health-based needs assessment of self-identified neurodivergent emerging adults with ADHD, learning disabilities, autism, and other conditions, mean (M) age = 22.8; standard deviation (SD) = 3.4; n = 26). This research used validated measures. The assessment - administered via Qualtrics to the participants in two sites - included the Mental Health Continuum-Short Form, Kessler-6 Psychological Distress Scale, Project EAT (Eating and Activity over Time)-IV (with the intuitive eating, weight-related control, emotional eating, and physical activity subscales), and an original health-focused needs assessment developed by interdisciplinary healthcare professionals and neurodivergent individuals. RESULTS: The sample reported low positive mental health, with only 3% reportedly "flourishing." The sample also reported high psychological distress according to clinical and psychometric cut-off scores; varied intuitive eating and weight-control behaviors and attitudes; and distinct needs related to integrating the principles of health promotion into daily life, navigating the healthcare system, and learning from healthcare professionals. Based on these findings, we present an initial conceptualization of "Adulting for Health," a potential virtual education program to promote health-related knowledge and capacities for this population. CONCLUSIONS: The results from this exploratory pilot study can be incorporated into existing programs and spur efforts to develop and test new interventions that can ameliorate health disparities for neurodivergent emerging adults.
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In the United States, one in six children has an intellectual and/or developmental disability (I/DD), including attention deficit hyperactivity disorder (ADHD), autism, cerebral palsy, learning disabilities, seizures, and developmental delays, with or without intellectual impairment. Individuals with I/DDs experience disproportionate rates of immune, metabolic, cardiovascular, and neurological disorders, as well as anxiety, depression, functional somatic symptoms, and other co-occurring physical and mental health conditions. During the coronavirus disease 2019 (COVID-19) pandemic, having an I/DD emerged as one of the strongest predictors of contracting and dying from COVID-19. These findings spurred increased attention toward the myriad health inequities affecting this population well before the pandemic. While inequities for individuals with I/DD can be traced to many factors, social determinants of health (SDOH) - the underlying social, economic, and environmental conditions that lead to poor health outcomes and high healthcare costs - are key contributors. Our interdisciplinary combined internal medicine and pediatrics (Med-Peds) team of physicians, psychologists, and researchers within a large, diverse, academic health system aimed to pilot-test the implementation of a five-item SDOH screener within a Med-Peds specialty clinic focused on the developmental needs of individuals with I/DD and their families (Leadership Education in Neurodevelopmental Disabilities {LEND}) and a general primary care practice (PCP). The SDOH screener tested in this initiative includes five items from the Accountable Health Communities (AHC) Health-Related Social Needs Screening Tool (HRSN) assessing social isolation, food insecurity, transportation, and paying for basic needs, such as housing and medical care. In this study, we describe the process of implementing this screener and collecting initial pilot data from 747 patients between October 2022 and April 2023 across the LEND and the primary care practice. We also highlight the challenges and opportunities identified during the mid-way point of implementation and pilot testing. The results of this pilot study revealed low response rates among SDOH screeners, spurring several measures to increase uptake, including increasing the accessibility of the screener and ensuring the screener results in effective referrals. We call on additional Med-Peds healthcare teams without universal SDOH screening protocols in place - particularly those serving the I/DD population - to consider adopting these practices.
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Objective Mental health among undergraduate students is a growing concern in higher education, but relatively little is known about the mental health of autistic college students. In order to better understand the unique needs of this population, the present study examines whether demographic and psychosocial correlates of anxiety and depression differ in autistic first-year college students and their non-autistic peers. Methods Secondary data analysis was conducted utilizing population-weighted data of full-time college students in their first year attending four-year colleges and universities in 2016, 2018, and 2019. Autistic and non-autistic students who self-identified as having frequent anxiety or depression were compared in terms of demographic characteristics, physical and emotional health, and academic aspirations and achievement. Results The majority of first-year students with frequent anxiety or depression in this sample tended to be white and had parents who completed a bachelor's degree or went to graduate school, with higher rates of male students in the autistic group. While autistic college freshmen with frequent anxiety or depression self-report lower overall quality of physical health (below average or lowest 10% reported by 57.3% vs. 37.1%) and higher rates of learning disabilities (25.3% vs. 4.6%) and psychological disorders (62.3% vs. 29.3%), these students also tend to outperform their non-autistic peers on standardized academic testing. Conclusion As autistic students are investing in themselves through their education and future careers, practitioners and researchers alike should be investing in accessible physical and mental health services in order to help set autistic students up for success in college and beyond.
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Few funding sources have explicitly supported systems-wide research to identify mechanisms for improving access, service delivery, outcomes and wellbeing for autistic transition-age youth and young adults. We aimed to integrate findings from research produced through a five-year federal Autism Transition Research Project (ATRP) cooperative agreement. This capstone review sought to: (1) map the body of scientific evidence that emerged from this federal award, and (2) identify remaining evidence gaps to inform future autism transition services research. We used scoping review methods to assess 31 ATRP-funded published scientific studies. We charted study characteristics, topical domains, socio-ecological levels of variables, focus on equity, and inclusion of autistic participants. We evaluated how these topics were addressed across studies to identify continued gaps in the evidence base. Compared to prior published reviews and research agendas, we found improvements in characterization of study participants, broader examination of socio-ecological correlates, and examination of multiple outcome domains. However, we also identified continued deficits in inclusion of autistic study participants, use of multisectoral data, and research with a strong focus on equity. Our recommended priorities for autism transition services research to facilitate healthy life outcomes and wellbeing included: continued analysis of population-level data and improved data infrastructure; development of service delivery methods and interventions that target marginalized groups; expanded research to inform improvements in the performance and coordination of complex service ecosystems that interface with autistic youth; and bolstering the roles of autistic research participants.
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Transtorno do Espectro Autista , Transtorno Autístico , Adolescente , Adulto Jovem , Humanos , Transtorno Autístico/terapia , Ecossistema , Transtorno do Espectro Autista/terapiaRESUMO
OBJECTIVE: Researchers collaborated with undergraduate minority students to quantitatively and qualitatively investigate college students' mental health during the first year of the COVID-19 pandemic. PARTICIPANTS: Participants were two convenience samples of diverse college students surveyed in June (n = 128; M age = 21.7, SD = 1.7) and December (n = 242; M age = 20.3, SD = 1.7) of 2020. METHODS: This study administered items from the California Health Interview Survey and open-ended qualitative items via Qualtrics. RESULTS: Across both waves, students reported significant mental health challenges and psychological distress. Students surveyed in December were three to four times more likely to report depression and anxiety. Female and older students reported heightened odds of mental health challenges. Qualitative findings elaborated on contributing factors. CONCLUSION: During the pandemic, college students have experienced pronounced mental health challenges, potentially exacerbated by academic, professional, relational, and environmental stressors and uncertainty.
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INTRODUCTION: The Maternal and Child Health (MCH) Pipeline Training Program, promotes development of a diverse health workforce by training undergraduate students from underrepresented minorities. We aimed to evaluate the success of this program based on three domains: (1) demographic characteristics, (2) academic and career development, and (3) attitudes towards the field of MCH and the training programs among graduates. METHODS: Three domains of success were determined through a collaborative effort between current program directors and the funding agency project officers. The survey with questions related to the three domains was distributed via an online platform to graduates from seven sites (one former site and six current sites). Data were analyzed and presented utilizing descriptive statistics. RESULTS: The survey was distributed to 550 graduates, 162 responded (37% response rate). Demographically, 78% were female, 54% were Black/African American, 22% were Latinx and 83% did not report any disability. Eighty percent of respondents applied to graduate/professional schools, 67% received admission. Graduates often continued to work in MCH fields (70%). Majority felt confident and knowledgeable in the field (89%) and agreed the faculty were supportive at their training sites (90%). CONCLUSION: The study highlights successes in recruiting from underrepresented minorities, particularly Black/African Americans and first-time college goers in the family into the MCH Pipeline Training Programs. Programs were successful in furthering academic and career development for most trainees. Attitudes towards MCH and the training programs were overwhelmingly positive. Continued support of these programs is critical in addressing health disparities and achieving health equity.
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Saúde da Criança , Grupos Minoritários , Escolha da Profissão , Criança , Feminino , Humanos , Masculino , Estudantes , Inquéritos e Questionários , UniversidadesRESUMO
PURPOSE: Presently, there are six undergraduate HRSA-funded MCH pipeline training programs (MCHPTP) in the nation and they have gained significant momentum since inception by recruiting, training and mentoring undergraduate students in a comprehensive MCH-focused approach. This article describes the outcomes from the 6 training programs; and primarily Baylor College of Medicine-Texas Southern University (BCM-TSU's) collaborative strategy focusing on the MCH research training and outcomes, which align with HRSA's MCH bureau's missions. DESCRIPTION: Each MCHPTP offers trainees interdisciplinary MCH research experiences through intra/inter-institutional collaborations and partnerships, but BCM-TSU's MCHPTP was the only one with the primary focus to be research. As a case study, the BCM-TSU Program developed an innovative research curriculum integrated with MCH Foundations Course that comprised 2 hour weekly meetings. Students were split into collaborative research groups of 4-5 students, with multidisciplinary peer-mentors, clinical fellows and MCH research faculty from institutions at the world-renowned Texas Medical Center. ASSESSMENT: Since the inception of the MCH mentorship programs, all six MCHPTPs have enrolled up to 1890 trainees and/or interns. BCM-TSU Program trainees are defined as undergraduate students in their 1st or 2nd year of college while research interns are upper classmen in their 3rd or 4th year of college. The case study showed that BCM-TSU Program trainees demonstrated outstanding accomplishments in the area of research through primary and co-authorships of 13 peer-reviewed journal publications by 78 trainees, over a period of 3 years, in addition to dozens of presentations at local, regional and national conferences. CONCLUSIONS: The research productivity of students in the six MCHPTPs is strongly indicative of the success of integrating MCH research mentoring into MCH didactic training. The development of a diverse and robust MCH mentorship program promotes and strengthens research activities in areas of high priority such as addressing health disparities in MCH morbidity and mortality in the U.S.
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Tutoria , Mentores , Currículo , Humanos , Avaliação de Programas e Projetos de Saúde , Recursos HumanosRESUMO
Nearly 20% of children in the United States have special health care needs, and they often experience disparities in health outcomes. This article reviews barriers to and facilitators of primary pediatric care for children within four defined categories of disability: (1) physical disabilities, both temporary and permanent; (2) chronic conditions requiring accommodations, including mental health conditions; (3) sensory disabilities and conditions; and (4) cognitive, educational, neurodevelopmental, and social disabilities. Primary care facilitators include interventions for both providers and patients that focus on time as a valued resource, provide psychosocial support, coordinate interdisciplinary teams of care, and provide training for providers. Barriers include exclusion of patients with disabilities from research trials and gaps in educational reform regarding ableism and hidden disabilities. Identified facilitators should be implemented on a larger scale, and barriers need to be addressed further so we may better support children with disabilities. [Pediatr Ann. 2022;51(6):e243-e253.].
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Pessoas com Deficiência , Pediatria , Criança , Acessibilidade aos Serviços de Saúde , Humanos , Estados UnidosRESUMO
OBJECTIVES: In the United States, autistic individuals experience disproportionate physical and mental health challenges relative to non-autistic individuals, including higher rates of co-occurring and chronic conditions and lower physical, social, and psychological health-related quality of life. The Autism Intervention Research Network on Physical Health (AIR-P) is an interdisciplinary, multicenter research network for scientific collaboration and infrastructure that aims to increase the life expectancy and quality of life for autistic individuals, with a focus on underserved or vulnerable populations. The current paper describes the development of the AIR-P Research Agenda. METHODS: Development of the research agenda involved an iterative and collaborative process between the AIR-P Advisory Board, Steering Committee, and Autistic Researcher Review Board. The methodology consisted of 3 phases: (1) ideation and design, (2) literature review and synthesis; and (3) network engagement. RESULTS: Six core research priorities related to the health of autistic individuals were identified: (1) primary care services and quality, (2) community-based lifestyle interventions, (3) health systems and services, (4) gender, sexuality, and reproductive health, (5) neurology, and (6) genetics. Specific topics within each of these priorities were identified. Four cross-cutting research priorities were also identified: (1) neurodiversity-oriented care, (2) facilitating developmental transitions, (3) methodologically rigorous intervention studies, and (4) addressing health disparities. CONCLUSIONS: The AIR-P Research Agenda represents an important step forward for enacting large-scale health-promotion efforts for autistic individuals across the lifespan. This agenda will catalyze autism research in historically underrepresented topic areas while adopting a neurodiversity-oriented approach to health-promotion.