Caregiver Perspectives on Barriers and Facilitators to Timely Well-Child Visits for Black Infants.

OBJECTIVES: Missed infant well-child visits (WCV) result in lost opportunities for critical preventive care. Black infants consistently receive less WCV care than other racial groups. We sought to understand barriers and facilitators to timely infant WCV for Black families in the context of COVID-19. METHODS: We conducted 21 semi-structured interviews with caregivers of Medicaid-insured Black children aged 15- to 24-months who attended six or fewer of eight recommended well-child visits within the first 15 months of life. Interviews focused on WCV value, barriers, and facilitators. After developing our initial coding structure through rapid qualitative analysis, we inductively derived the final codebook and themes through line-by-line content analysis. RESULTS: Caregivers attended a mean of 3.53 of eight infant visits. Structural (e.g., transportation) and psychological (e.g., maternal depression) barriers delayed Black infant WCV. Families most frequently valued monitoring development and addressing concerns. Caregivers perceived visits as less urgent when infants seemed healthy or more recently avoided visits due to fears around COVID-19. Long waits and feeling rushed/dismissed were linked to WCV delays; positive provider relationships encouraged WCV attendance. Most caregivers reported reluctance to vaccinate. Vaccine hesitancy contributed to delayed infant WCV. CONCLUSIONS: Caregivers described several factors that impacted WCV attendance for Black infants. Persistent structural and psychological barriers are compounded by perceptions that caregiver time is not respected and by notable vaccine hesitancy. To address these barriers, well-care can meet Black families in their communities, better address caregiver wellbeing, more efficiently use caregiver and provider time, and cultivate partnerships with Black caregivers.

Identifying Individuals With Intellectual Disability Within a Population Study.

BACKGROUND: Much remains unknown about the longitudinal health and well-being of individuals with intellectual disability (ID); thus, new methods to identify those with ID within nationally representative population studies are critical for harnessing these data sets to generate new knowledge. OBJECTIVE: Our objective was to describe the development of a new method for identifying individuals with ID within large, population-level studies not targeted on ID. METHODS: We used a secondary analysis of the de-identified, restricted-use National Longitudinal Study of Adolescent to Adult Health (Add Health) database representing 20,745 adolescents to develop a method for identifying individuals who meet the criteria of ID. The three criteria of ID (intellectual functioning, adaptive functioning, and disability originating during the developmental period) were derived from the definitions of ID used by the American Psychiatric Association and the American Association on Intellectual and Developmental Disabilities. The ID Indicator was developed from the variables indicative of intellectual and adaptive functioning limitations included in the Add Health database from Waves I to III. RESULTS: This method identified 441 adolescents who met criteria of ID and had sampling weights. At Wave I, the mean age of this subsample of adolescents with ID was 16.1 years. About half of the adolescents were male and from minority racial groups. Their parents were predominately female, were married, had less than a high school education, and had a median age of 41.62 years. The adolescents' mean maximum abridged Peabody Picture Vocabulary Test standardized score was 69.6, and all demonstrated at least one adaptive functioning limitation. DISCUSSION: This study demonstrates the development of a data-driven method to identify individuals with ID using commonly available data elements in nationally representative population data sets. By utilizing this method, researchers can leverage existing rich data sets holding potential for answering research questions, guiding policy, and informing interventions to improve the health of the ID population.

Health Care Transition for Adolescent and Young Adults with Intellectual Disability: Views from the Parents.

PURPOSE: This study explored the health care transition (HCT) experiences of parents of adolescents and young adults (AYAs) with intellectual disability (ID), 18-33 years of age, including barriers and facilitators to the AYA's transition to adulthood within and between the medical, educational, community, and vocational systems. DESIGN AND METHODS: A qualitative descriptive design with semi-structured individual interviews with 16 parent participants was used. Purposive sampling of parents was utilized with variation on race/ethnicity and AYA age, stage in transition, and condition. This study was conducted through a major medical center in the southeast United States. Content analysis was utilized. RESULTS: Three overarching themes represented the factors and essence of supporting AYAs with ID transition to adulthood. Inefficient and siloed systems illuminated barriers families are commonly experiencing within and between the medical, educational, community, and vocational systems. 'Left out here floundering' in adulthood, described the continued inadequacy of resources within each of these systems and parent's having to find available resources themselves. Hope despite uncertainty, included the perceived costs and benefits of their AYA's disability and the value of parent peer support in providing key knowledge of resources, strategies, and perspectives. CONCLUSIONS: Our findings illuminate the need for improved infrastructure to provide effective HCT and partnerships to help integrate HCT support within other life course systems. Results support the rationale for non-categorical HCT-focused approach. PRACTICE IMPLICATIONS: A parent peer coach-facilitated intervention offers promise for bridging the gap between systems and meeting family needs.

Psychometric Properties and Factor Structure of the Center for Epidemiologic Studies Depression Scale in a National Sample of Arab Adolescents.

Having valid, reliable, and culturally adapted tools to screen for adolescent depression is a crucial concern for mental health care professionals who promote preventive care. To this aim, this study tested the psychometric properties and factor structure of the Center for Epidemiologic Studies Depression (CES-D) Scale among Arab adolescents. A nationally representative sample of 3,292 Jordanian adolescents aged 13-17 completed the CES-D 20-item scale. A principal axis factoring with a varimax rotation was used to identify the factor structure of the scale on a half of the sample (n1 = 1,655), followed by a confirmatory factor analysis to assess the fitness of the factor structure to the other half of the sample (n2 = 1,637) on a variety of model-fit indices. Findings did not support the original four-factor structure. The results indicated that two factors provide a reasonably better fit: Factor 1 combined items on depressed affect, somatic complaints and interpersonal problems, and Factor 2 consisted of the remaining four positive affect items. The modified model showed high internal reliability and excellent construct validity. The results revealed that depression construct among Arab adolescents, as measured by the CES-D, differs from that in other ethnic groups. Nurses and other health professionals need to closely examine the different presentation of depressive symptoms across racial and ethnic groups to avoid diagnostic errors, inappropriate management, and poor compliance.

Remodeling Broken Systems: Addressing the National Emergency in Child and Adolescent Mental Health.

A national emergency in child and adolescent mental health was declared in the United States in 2021 in the wake of the COVID-19 pandemic. This Open Forum discusses potential solutions to better support child and adolescent mental health by improving or expanding school-based mental health services, child psychiatry access programs, virtual mental health services, and new models of care (e.g., integrated youth services hubs and crisis stabilization units). The success of such programs is dependent on stable funding, strong leadership and accountability, robust and well-trained workforces, systems integration, and attention to health equity.

Inequities in Receipt of the North Carolina Medicaid Waiver Among Individuals with Intellectual Disability or Autism Spectrum Disorder.

OBJECTIVE: We examined characteristics associated with receiving the North Carolina Home and Community-Based Services Waiver for intellectual and developmental disabilities (I/DDs) and its association with emergency department (ED) utilization. METHOD: Through analysis of the North Carolina 2017 to 2018 Medicaid claims and enrollment data, we examined characteristics (age, sex, race and ethnicity, geography, diagnosis (intellectual disability [ID] with or without autism spectrum disorders or autism spectrum disorder without ID) associated with receiving the NC I/DD Waiver and the association of this Wavier with ED utilization. We identified patients with at least 1 International Classification of Diseases-10-CM diagnosis code for an ID or autism spectrum disorder. We excluded patients with missing county information and whose enrollment in the NC I/DD Waiver program began after October 1, 2017. RESULTS: Only 22% of 53,531 individuals with I/DD in North Carolina received the Waiver. Non-Hispanic Blacks and Hispanic individuals were less likely to receive the Waiver than non-Hispanic White individuals. Adults (>21 years old), men, and urban residents were more likely to receive the Waiver. Individuals who received the Waiver were 31% less likely to use the ED. CONCLUSION: Innovative strategies are needed to provide equitable access to the NC I/DD Waiver and provide services to the 14,000 people with I/DD currently waiting to receive the Waiver. Through the Waiver, those with I/DD can access preventative and therapeutic outpatient services and decrease their need for ED care. These findings highlight the need for policy reform to address inequities in access to the Waiver for individuals with I/DD.

Racial and Ethnic Differences in Psychotropic Prescription Receipt Among Pediatric Patients Enrolled in North Carolina Medicaid.

OBJECTIVE: The authors aimed to examine racial-ethnic differences in filled psychotropic prescriptions among a pediatric Medicaid population. METHODS: This retrospective cohort study included patients ages 0-21 with at least one North Carolina Medicaid claim from October 1, 2017, through September 30, 2018 (N=983,886). The primary outcome was a filled psychotropic prescription. Separate multivariable modified Poisson regression models generated adjusted risk ratios (ARRs) and 95% confidence intervals (CIs), adjusted for patient demographic characteristics. RESULTS: Black and Hispanic patients were significantly less likely to receive any filled psychotropic prescription (ARR=0.61, 95% CI=0.60-0.62; ARR=0.29, 95% CI=0.28-0.29, respectively) compared with White and non-Hispanic patients. Furthermore, Black and Hispanic patients were less likely to receive filled prescriptions in the four included drug classes compared with White and non-Hispanic patients. CONCLUSIONS: Future studies should focus on understanding the factors contributing to racial and ethnic differences among pediatric patients receiving filled psychotropic prescriptions.