Educational Values of Latino Families Participating in a School Readiness Intervention: Hopes and Implications for Pediatrics.

OBJECTIVE: To explore Latino parents' educational values and hopes for their preschool-aged children after a clinic school readiness (SR) intervention. METHODS: Qualitative analysis of semi-structured interviews of Latino parents regarding their perceptions of a novel SR coaching intervention (2016-2017). Parents who received the intervention were approached for interview (n = 74); 59 postintervention interviews were completed in English or Spanish, audio recorded, transcribed, and translated into English. Iterative team-based coding and inductive thematic analysis of 47 interviews were conducted by 3 team members using Dedoose. RESULTS: Children were on average 4.5 years old, with the majority speaking Spanish at home (57%), and having preschool experience (81%). Mothers mostly had no paid employment (53%) and limited formal education. Four domains emerged: 1) education is valued and seen as a pathway to a successful life for children, and 2) while structural and cultural barriers exist, 3) Latino families are motivated and 4) trust providers to offer SR support. Parents suggested pediatricians could provide more SR knowledge to families and offer programs within primary care. Integration of findings are summarized in a framework for clinical practice. CONCLUSION: Latino parents' trust in their pediatric providers, combined with their strong educational aspirations for their children, offers the pediatric clinic an opportunity to partner with families to reduce systemic SR barriers. Pediatric providers can support Latino parents in preparing their children for school through culturally responsive, strengths-based approaches that build on their educational aspirations, value existing SR efforts, offer SR knowledge around early literacy and math, and build connections to early childhood programs.

Provider perspectives on equity in use of mobile health autism screening tools.

LAY ABSTRACT: Families may find information about autism online, and health care and education providers may use online tools to screen for autism. However, we do not know if online autism screening tools are easily used by families and providers. We interviewed primary care and educational providers, asking them to review results from online tools that screen for autism. Providers had concerns about how usable and accessible these tools are for diverse families and suggested changes to make tools easier to use.

Pediatricians' role in healthcare for Latino autistic children: Shared decision-making versus "You've got to do everything on your own".

LAY ABSTRACT: Latino parents may choose to use complementary health approaches, such as vitamins, supplements, and special diets, for their autistic children. However, they might not tell their pediatrician about their complementary health approach use if they worry that the pediatrician will disapprove or judge them. This fear, along with pediatricians' lack of autism knowledge, creates barriers to "shared decision-making" between parents and pediatricians. Shared decision-making is a process where families and healthcare providers collaborate and exchange information in order to come to an agreement about treatment options. In our qualitative study with 12 bilingual Latino families of autistic children, we interviewed and observed families to learn about their experiences with both conventional healthcare (their pediatrician) and complementary health approaches. Our study results describe the parents' different pathways to an autism assessment, a process that is sometimes called the "diagnostic odyssey." The parents reported that conventional healthcare met their needs for their child's physical health but not for their child's developmental challenges. The parents who used complementary health approaches for their autistic children were more frustrated about a lack of autism information from pediatricians than those who did not use complementary health approaches. Finally, we describe two examples of successful shared decision-making between parents and pediatricians. We conclude that pediatricians who are able to talk about complementary health approaches with Latino families may help to facilitate shared decision-making and reduce healthcare disparities for Latino autistic children.

An Intervention to Increase Detection of Developmental Delays in Special Supplemental Nutrition Program for Women, Infants, and Children.

BACKGROUND: Low-income children are at risk for under-detection of developmental disabilities (DDs). Special Supplemental Nutrition Program for Women, Infants, and Children (WIC) clinics see low-income children regularly in early childhood and could be an important source of referrals to developmental services. METHODS: This was a site-randomized trial of an intervention to train WIC staff in early identification of DDs, using Center for Disease Control and Prevention's Learn the Signs Act Early (LTSAE) developmental monitoring materials. Seven county WIC agencies in Oregon enrolled: 4 intervention agencies and 3 control agencies. The intervention consisted of an on-site, half-day training regarding signs of developmental delays, use of LTSAE materials, and referral to Early Intervention and Early Childhood Special Education (EI/ECSE). Control sites received no training and continued their usual care and referral processes. Primary study outcome was number of children referred from WIC to EI/ECSE in control versus experimental counties as well as % of referrals evaluated, using data obtained from Oregon's EI/ECSE program. Data for 46 children referred to EI/ECSE were obtained. RESULTS: Overall, 3 of 4 intervention sites increased their referrals to EI/ECSE, and 0 of 3 control sites increased referrals. Total referrals in the intervention arm increased from 5 to 33 in the intervention arm, but decreased from 6 to 2 in the control arm. In the intervention arm, referrals increased for both boys and girls and for all ages. CONCLUSIONS: This brief intervention with WIC staff led to short-term increases in EI referrals and evaluations. Such interventions may hold promise for reducing disparities.

Mobile and online consumer tools to screen for autism do not promote equity.

LAY ABSTRACT: Many parents wonder if their child might have autism. Many parents use their smartphones to answer health questions. We asked, "How easy or hard is it for parents to use their smartphones to find 'tools' to test their child for signs of autism?" After doing pretend parent searches, we found that only one in 10 search results were tools to test children for autism. These tools were not designed for parents who have low income or other challenges such as low literacy skills, low English proficiency, or not being tech-savvy.

Caregiver Experiences in Pediatric Hospitalizations: Challenges and Opportunities for Improvement.

BACKGROUND: There are limited qualitative data describing general pediatric hospitalizations through the caregivers' lens, and most focus on one particular challenge or time during the hospitalization. This qualitative study aimed to address a gap in the description of the breadth and depth of personal challenges caregivers may face during the entire hospitalization, irrespective of severity of patient illness or diagnosis, and explored caregiver-suggested interventions. METHODS: Caregivers of pediatric patients on the hospitalist service at a Pacific Northwest children's hospital were interviewed to explore their hospitalization experience and solicit feedback for potential interventions. Content was coded iteratively using a framework analysis until thematic saturation was met. Findings were triangulated through 2 focus groups, 1 with parent advisors and the other with hospital physicians and nurses. RESULTS: Among 14 caregivers (7 each of readmitted and newly admitted patients) and focus group participants, emergent domains on difficulties faced with their child's hospitalization were anchored on physiologic (sleep, personal hygiene, and food), psychosocial (feelings of isolation, mental stress), and communication challenges (information flow between families and the medical teams). Caregivers recognized that addressing physiologic and psychosocial needs better enabled them to advocate for their child and suggested interventions to ameliorate hospital challenges. CONCLUSIONS: Addressing physiologic and psychosocial needs may reduce barriers to caregivers optimally caring and advocating for their child. Downstream consequences of unaddressed caregiver challenges should be explored in relation to participation in hospital care and confidence in shared decision-making, both vital components for optimization of family-centered care.

Addressing current barriers to autism diagnoses through a tiered diagnostic approach involving pediatric primary care providers.

Formal autism diagnosis from a specialist trained in autism assessment is customary prior to a child accessing early, intensive autism-specific services. However, long wait lists for diagnostic evaluations and limited specialty workforce have created substantial delays. Additionally, lengthy multidisciplinary evaluations are costly to insurers, inconvenient to families, and disproportionally impact under-resourced families. Diagnostic delays can impede access to intervention services. These barriers, combined with evidence regarding the importance of receiving early, autism-specific treatment, demand new approaches enabling access to autism specific services before comprehensive evaluation. Pediatric primary care providers (PCPs) are often the only health care professionals with whom a family interacts during early childhood and can play a crucial role in helping children with autism symptoms access services. Many strategies for autism diagnosis in primary care are being developed and tested; however, they have yet to be broadly adopted by PCPs, primarily due to critical implementation barriers in primary care settings. There is also not enough evidence on the accuracy of PCPs' diagnostic impressions without extensive specialty support, resulting in PCP hesitancy in diagnosing ASD, as well as family and service provider hesitancy in accepting a PCP autism diagnosis. In this commentary, we explore the acute need for shortening waitlists for autism evaluations through a tiered diagnostic approach, in which PCPs can rule in or rule out autism in children, for whom diagnosis is clear, and refer more complex cases for specialist evaluations, and explore implementation challenges to this approach.

Serving young children with communication disabilities from Latinx backgrounds and their families with equity: Provider perspectives.

INTRODUCTION: Latinx children with communication disorders from birth to age 5 and their families are increasingly served in United States (US) educational and medical settings where longstanding structural barriers threaten their access to equitable assessment and intervention. However, little is known about providers' perceptions serving this highly diverse population as they relate to reducing disparities in care for communication disorders. METHODS: This exploratory qualitative study interviewed 24 speech-language pathologists (SLPs) and early intervention (EI)/early childhood special education (ECSE) developmental specialists serving young Latinx children with communication disorders to offer targeted recommendations toward improving equity. The semi-structured interview included questions regarding communication assessment, diagnostics/eligibility, intervention, interpretation, translation, and solutions to enhance EI/ECSE. Interviews were coded with content analysis using elements of grounded theory, and responses from SLPs in medical versus education settings and from EI/ECSE developmental specialists were compared. Data triangulation was used to validate themes. RESULTS: Analysis revealed the following themes related to provider challenges and resources: family factors, provider factors, cultural and linguistic differences, assessment approaches, eligibility determinations, translation and interpretation, and institutional factors. Few variations in themes between provider types (SLPs vs. EI/ECSE developmental specialists) and settings (medical vs. educational) were found. Providers also offered several policy and practice solutions. CONCLUSIONS: Findings suggest minimal advances in improving equity for young Latinx children with communication disorders over prior decades. Results also indicate that providers may benefit from reflecting on their cultures and biases as well as systemic racism within EI/ECSE.

Parents' Concerns Are Associated with Early Intervention Evaluation and Eligibility Outcomes.

OBJECTIVE: To test the association of parents' concerns with early intervention (EI) developmental services outcomes including evaluation, eligibility, and enrollment in services. METHOD: We collected survey data on parents' concerns and EI service use data from a sample of 428 children referred to EI from 2016 to 2018 in 6 Oregon primary care clinics serving lower-income families as part of a developmental and autism spectrum disorder screening intervention. We assessed EI service use trajectories and associations of the presence of parent concern, age of child at the time of parents' concerns, number of concerns, and type of provider concern, with EI evaluation, EI eligibility, and enrollment in EI services, using bivariate testing and multivariable logistic regression. RESULTS: Only 22.9% of children referred to EI were enrolled in services 6 months later. Children whose parents had developmental and/or behavioral concerns were more likely to receive an EI evaluation and were also more likely to be eligible for services, compared with children whose parents had no concerns. There was no association between age, number of concerns, and type of concern with EI evaluation, eligibility, or services enrollment. CONCLUSION: Although only a minority of children referred to EI enrolled in services, the presence of parent concern is strongly associated with EI services evaluation and eligibility outcomes. Study results suggest that providers should assess the presence of parent concern when deciding on EI referrals and provide more support to parents who are not concerned at all.

Below the Surface: Caregivers' Experience of Hospital-to-Home Transitions.

OBJECTIVE: Our aim was to understand the breadth of the hospital-to-home experience from the caregiver perspective using a mixed method approach. METHODS: Caregivers of children who experienced an inpatient admission (N = 184) completed a hospital-to-home transition questionnaire after discharge. Twenty-six closed-ended survey items captured child's hospitalization, discharge, and postdischarge experiences and were analyzed using descriptive statistics. Four additional free-response items allowed caregivers to expand on specific challenges or issues. A conventional content analysis coding framework was applied to the free responses. RESULTS: Ninety-one percent of caregivers reported satisfaction with the hospital experience and 88% reported they understood how to manage their child's health after discharge. A majority of survey respondents (74%) provided answers to 1 or more of the qualitative free-response items. In the predischarge period, qualitative responses centered on concerns related to finances or available resources and support, communication, hospital environment, and the discharge process. Responses for the postdischarge time period centered on family well-being (child health, other family member health), finances (bills, cost of missed work), and medical follow-up (supplies, appointments, instruction). CONCLUSIONS: Caregivers were generally satisfied with their hospital experience; however, incorporating survey items specifically related to family stressors either through closed- or open-ended questions gave a richer context for caregiver-identified concerns. Basing future quality improvement efforts on supporting caregiver needs and identifying stressors before discharge may make for a more robust and successful transition to home.

Wy'east: An Innovative, Culturally Responsive Postbaccalaureate Pathway for American Indians and Alaska Natives.

PROBLEM: American Indians and Alaska Natives (AIANs) face significant health disparities that are exacerbated by limited access to high-quality, culturally congruent health care providers. There are no premedical postbaccalaureate programs focused on AIAN students. APPROACH: The Northwest Native American Center of Excellence designed the Wy'east Pathway in 2018 to increase the number of AIANs matriculating to U.S. medical schools by supporting those on the cusp of matriculation. Wy'east scholars undertake 10 months of structured programming to augment their academic preparation, improve their Medical College Admission Test (MCAT) scores, and enhance their confidence and cultural identity. Cultural events and mentorship opportunities with AIAN faculty, staff, and cultural liaisons are threaded throughout the pathway curriculum to foster cultural resilience, mentorship, and community. Scholars earn conditional acceptance to Oregon Health and Science University (OHSU) School of Medicine if they complete Wy'east and meet the following criteria: pass all examinations in the primary curricular threads, obtain a qualifying MCAT score, and meet professionalism standards. OUTCOMES: All 14 scholars who successfully completed Wy'east and met criteria in the first 2 cohorts (academic years 2018-2019 and 2019-2020) earned conditional acceptance to OHSU School of Medicine. Ten of the 14 scholars (71.4%) matriculated to OHSU School of Medicine, 2 (14.3%) matriculated to other medical schools, and 2 (14.3%) chose to pursue other health care fields. Wy'east scholars rated the foundational science of medicine and population health and epidemiology threads higher in terms of making them feel better prepared for medical school (mean = 4.71 and 4.83, respectively) than the academic skills and wellness thread (mean = 3.43). NEXT STEPS: Over the next 5 years, Wy'east will grow incrementally to offer a total of 18 conditional acceptance spots per cohort across 3 medical schools. Longitudinal tracking of Wy'east scholars' medical training and career outcomes will be conducted.

Moving Through the Pipeline: Ethnic and Linguistic Disparities in Special Education from Birth Through Age Five.

This study examined Oregon's early intervention (EI) and early childhood special education (ECSE) pipelines as a function of children's intersecting ethnicity and home language(s) with a focus on children from Latino/a backgrounds with communication disorders. We found differences in children's referral source and age of referral, likelihood of evaluation and placement, and type of placement for conditions related to communication, including autism spectrum disorder and hearing impairment. Results showed differences in EI and ECSE; however, disproportionality appeared greatest among Spanish-speaking Latino/a children and non-Latino/a children who spoke languages other than English compared to non-Latino/a English-speaking counterparts. Our findings suggest attending to children's intersecting ethnicity and language backgrounds in referral, evaluation, and placement add nuance to examinations of disproportionality. Results also indicate that practices related to characterizing children's communication disorders likely make substantial contributions to inequities in EI and ECSE. Precise identification of differences in service provision can lead to targeted policy and practice solutions to reduce structural barriers to care in EI/ECSE systems and improve equity, particularly as related to placement for children of color with communication concerns.

Clinical Profiles of Black and White Children Referred for Autism Diagnosis.

Black children with autism are diagnosed at an older age. Whether or not late detection is paralleled by differing clinical presentation is not known. We evaluated symptom profiles of 245 Black and 488 sex- and age-matched White non-Hispanic participants (82.8% male; mean age: 4.2 years) referred for ASD diagnosis. Both groups showed similar overall levels of autistic symptoms. Black children had significantly but slightly lower scores on cognitive tests and on the Vineland communication domain than White children. Groups were comparable on internalizing and externalizing co-occurring problems. Given the largely similar clinical profiles, clinical differences in initial presentation may not be a primary reason for Black/White disparities in diagnostic and services use. Limitations of a cross-sectional referred sample are acknowledged.

Early Intervention Referral Information, Transmission, and Sources-A Survey of State Part C Coordinators and Analysis of Referral Forms.

OBJECTIVE: Early Intervention (EI) referral is a key connector between health care and early childhood systems serving children with developmental risks. This study aimed to describe the US network of EI referrals by answering the following: "What information is sent to EI?", "Who sends it?", and "How is it sent?" METHOD: This study combined an analysis of national document-based and website-based referral forms with a survey of state Part C Coordinators (PCCs). Data on referral forms were systematically collected from state agency websites. PCCs from 52 jurisdictions were surveyed to assess current EI referral practices. Descriptive statistics were used for responses to multiple-choice items; free-text answers were condensed into key study themes. RESULTS: EI referral forms came as e-documents (81%) or websites (35%), and 72% were in English alone. They emphasized family and referral source contact information and reason for the referral. The survey results indicated that health care (45%) sends the most referrals, followed by families (30%). EI agencies received referrals by phone (38%), electronically (23%), e-mail (17%), and fax (17%), and PCCs valued this diversity of methods. Few states received referral data directly from electronic health records (EHRs); however, PCCs hope to eventually receive referrals through websites, mobile devices, and EHRs. CONCLUSION: EI referral data flow is complex, with opportunities for loss of children to follow-up. This study describes how EI referrals occur and provides examples of how communication and access to information may be improved.

Challenging Case: The Role of Genetic Testing in Complex Autism.

CASE: S is a 12-year-old boy with autism spectrum disorder (ASD), seizure disorder, cerebral palsy, and intellectual disability who presented to the primary care clinician for a preventative care visit.S was born at full term after an unremarkable pregnancy. His developmental delays were first noted at around 8 months, when he could not sit independently and had intermittently poor eye contact. He was referred to Part C Early Intervention and subsequently evaluated by a neurodevelopmental pediatrician, where he was noted to be hypotonic, with delayed motor and cognitive skills. Initial genetics evaluation included karyotype, fragile X testing, Angelman and Prader-Willi DNA fluorescence in situ hybridization probes, POLG sequencing, MECP2 testing, a microarray, creatinine kinase, very long-chain fatty acids, lymphocyte arylsulfatase, urine organic acids, and plasma amino acids, all of which were normal.As time progressed, S continued to have motor and communication delays and developed choreic movements. He also developed episodes concerning for seizure, including periods of staring while awake and episodes of extremity shaking lasting a few seconds with associated eye deviation, which eventually progressed to generalized seizures. He also developed periods of lethargy. Outpatient workup included several EEGs, which were notable for foci in the right frontal and left temporal regions. He has had several brain MRIs showing generalized volume loss and had critical laboratory tests during a period of lethargy, which were unconcerning. He was treated with multiple antiseizure medications. He was diagnosed with ASD at age 5 years because of delayed language, poor social communication, and repetitive behaviors.Over time, S continued to experience global developmental delays and autistic-like behaviors and remained minimally verbal. However, clinicians noted a number of developmental strengths, including a generally positive mood, a willingness to participate in therapy, improved receptive language skills, attachment to his mother, and a love of nature and the outdoors. He participated in a number of therapy modalities including speech/language therapy, occupational therapy, physical therapy, applied behavioral analysis, aqua therapy, partner-assisted scanning, and therapeutic horseback riding.In 2019, whole-exome sequencing was newly covered by the state Medicaid program, and testing was obtained in 2020. Whole-exome sequencing revealed a de novo STXBP1 pathogenic variant c.874C>T (p.Arg292Cys), which is associated with developmental and epileptic encephalopathy. His presentation is consistent with STXBP1 encephalopathy including refractory epilepsy, ASD, intellectual disability, and movement disorders.What are important considerations in genetic testing for children with autism? How does a genetic testing result alter management for clinicians and families?

Perceived community disability stigma in multicultural, low-income populations: Measure development and validation.

BACKGROUND: Stigma and knowledge about disabilities differ across groups, impacting care. No validated measures of perceived community disability stigma exist for families in multicultural communities, at risk for disparities. AIMS: Develop and validate a brief bilingual (i.e., English/Spanish) perceived disability stigma measure, compare perceived disability and autism stigma, and examine perceived disability stigma by parent sociodemographic characteristics and disability familiarity. METHODS AND PROCEDURES: Secondary data from 522 parents with children ages 2-5 years were recruited from Oregon WIC Special Supplemental Nutrition Program agencies for a child development and disability survey in 2015. The study sample included items regarding disability familiarity and stigma, among the survey population, which was 50 % Latino. Internal consistency, reliability and structural validity were examined. Secondary data on perceived disability and similar autism stigma items were compared. Nested multivariable linear regression assessed associations of perceived disability stigma with sociodemographic characteristics and disability familiarity. OUTCOMES AND RESULTS: Five perceived disability stigma items had reasonable internal consistency and performed well in the confirmatory factor analysis. Perceived autism stigma was greater than perceived disability stigma. Latino parents reported less perceived disability stigma than white parents. Parents who knew 1+ individual(s) with a disability reported greater perceived disability stigma. CONCLUSIONS AND IMPLICATIONS: The perceived disability stigma scale demonstrated sound psychometric properties. Results suggest differences in how stigma is perceived across sociodemographic characteristics and disability familiarity.

Secondary Analysis of Existing Data Sets for Developmental Behavioral Pediatrics.

ABSTRACT: Secondary analysis of existing large, national data sets is a powerful method to address many of the complex, key research questions in developmental behavioral pediatrics (DBP). Major advantages include decreasing the time needed to complete a study and reducing expenses associated with research by eliminating the need to collect primary data. It can also increase the generalizability of research and, with some data sets, provide national estimates that may form the basis for developing policy. However, few resources are available to direct researchers who seek to develop expertise in this area. This study aims to guide investigators with limited experience in this area who wish to improve their skills in performing secondary analysis of existing large data sets. This study provides direction on the steps to perform secondary analysis of existing data sets. It describes where and how data sets can be identified to answer questions of interest to DBP. Finally, it offers an overview of a number of data sets relevant to DBP.