Pathways Through Early Psychosis Care for U.S. Youths From Ethnically and Racially Minoritized Groups: A Systematic Review.

OBJECTIVE: The authors of this systematic review examined service utilization and outcomes among youths from ethnoracially minoritized groups after the youths initiated treatment for a psychotic disorder-that is, the youths' "pathway through care." Also examined were potential moderating variables in pathways through care for these youths at the clinic, family, and cultural levels. The goal was to describe methodologies, summarize relevant findings, highlight knowledge gaps, and propose future research on pathways through care for young persons from ethnoracially minoritized groups who experience early psychosis. METHODS: The PubMed, PsycInfo, and Web of Science literature databases were systematically searched for studies published between January 1, 2010, and June 1, 2021. Included articles were from the United States and focused on young people after they initiated treatment for early psychosis. Eighteen studies met inclusion criteria. RESULTS: Sixteen of the 18 studies were published in the past 5 years, and 11 had an explicit focus on race and ethnicity as defined by the studies' authors. Studies varied in terminology, outcomes measures, methodologies, and depth of analysis. Being an individual from an ethnoracially minoritized group appeared to affect care utilization and outcomes. Insufficient research was found about potential moderating variables at the clinic, family, and cultural levels. CONCLUSIONS: Studies of pathways through care for persons from minoritized groups warrant further funding and attention.

Client Racial Composition in First-Episode Psychosis Programs Compared With Compositions in Program Service Areas.

OBJECTIVE: The authors examined the extent to which clients served by first-episode psychosis programs reflected the racial composition of the surrounding service area and, to the extent that they did not, explored possible explanatory factors. METHODS: As part of a national study of coordinated specialty care (CSC) sites in the United States, 35 programs documented race for 772 clients. Programs identified a geographic service area for their clients. Using Census data, the authors identified the proportion of clients in this service area who were Black and then examined the extent of disproportionality, calculated as a risk ratio and as a relative difference in racial composition between CSC programs and their service areas. RESULTS: Overall, 71% of CSC programs had a disproportionately greater proportion of Black clients than Black residents within the service area. This disproportionality was still evident after conducting sensitivity analyses that included adjusting for sampling error in the service area population estimates; however, smaller study sites displayed greater fluctuations in disproportionality in the sensitivity analyses. CONCLUSIONS: Using data from diverse CSC programs, the authors illustrate that the odds of Blacks receiving services through a CSC program are much higher than would be expected on the basis of the population living in the area being served by the program. Multiple reasons may explain this finding, but in the absence of clear explanatory factors, this result may be ripe for discussion and further investigation.

Growth of Coordinated Specialty Care in the United States With Changes in Federal Funding Policies: 2014-2018.

OBJECTIVE: In 2014, the number of coordinated specialty care (CSC) programs in the United States greatly expanded. The proliferation of CSC programs was likely due in part to the availability of Mental Health Block Grant (MHBG) set-aside funds for treatment of first-episode psychosis. This study aimed to explore the characteristics of CSC programs across 44 states, the District of Columbia, and three U.S. territories that received funding through the MHBG set-aside program in 2018. METHODS: Leadership at 88% (N=215) of the 244 MHBG-funded CSC programs identified through state mental health authorities participated in an online survey. RESULTS: Overall, 69% of the CSC programs were initiated after 2014. More than 90% of programs included services that were consistent with federal guidance. CSC programs showed variability in training received, program size, and enrollment criteria. CONCLUSIONS: The results of this study emphasize that clear federal guidance can help shape national CSC implementation efforts, although decisions at the state and local levels can influence how implementation occurs. The strategy of states administering federal funds for CSC may be adapted for the rollout of other behavioral health interventions. Future studies could investigate factors that may shape national dissemination efforts, such as leadership within the state, funding, availability of programs established before the influx of funding, and considerations about sustainability after the funding is no longer available.

Paths Toward Sustainable State and County Systems of Care.

The Substance Abuse and Mental Health Services Administration's Children's Mental Health Initiative (CMHI) Cooperative Agreements support the development of children's systems of care (SOCs). The National Evaluation of CMHI interviewed representatives from Mental Health Authorities (MHA) and Medicaid agencies in 25 state, county, and municipal jurisdictions in the FY13 and FY14 grant cohorts in grant years 2 and 4. This paper analyzes funding for five services (wraparound planning; intensive care coordination; family peer support; youth peer support; and flexible funding) that are a core part of SOCs, and grantee descriptions of sustainability strategies and challenges. The analysis found that, of the five pathways described in the literature: securing Medicaid coverage; obtaining state MH system funding; braiding funding with other child-serving systems; modifying payment structures to support workforce development; and redeploying funds from higher cost to lower cost services, grantees most frequently used Medicaid coverage, often combined with MHA funding.

Opportunities for psychologists to enact community change through adverse childhood experiences, trauma, and resilience networks.

A growing body of evidence on the inequitable distribution of adverse childhood experiences (ACEs; e.g., Merrick et al., 2018) and their impact throughout the life-course (e.g., Metzler et al., 2017) has highlighted the need to focus on their underlying causes (Ellis & Dietz, 2017). This increasing recognition of ACEs as a preventable public health problem (Bellis et al., 2019) with roots in the community environment has spurred collective responses (e.g., Srivastav et al., 2020), including the emergence of multisector, community-based networks organized to address ACEs and trauma and foster resilience, or "ATR networks" (Jones et al., 2017). ATR networks provide a platform for psychologists to contribute their theoretical, clinical, and research skills to community-level ACEs prevention and mitigation efforts collectively designed by a diverse group comprising professionals from a range of disciplines, advocates, grass-roots leaders, and community residents. Using evidence from an evaluation of Mobilizing Action for Resilient Communities, a recent multisite initiative of 14 ATR networks, this article describes the structure, operation, and accomplishments of these networks to make a case for the ways in which psychologists, working with other professionals and grassroots leaders, can contribute to these efforts. Findings highlight how sectors in which psychologists typically work, play pivotal roles in ATR networks, the ways in which network members in these sectors both influence and are influenced by the networks, and the types of outcomes achieved by the networks within these sectors. Suggestions are offered for the roles psychologists can play to enhance network efforts. (PsycInfo Database Record (c) 2021 APA, all rights reserved).

Family Organizations in Children's Mental Health Systems of Care: the Challenge of Maintaining Financial Sustainability.

Family-run organizations are an important source of support for families of children with serious emotional disturbance, yet little work has explored how these organizations sustain their work. The National Evaluation Team (NET) for the Substance Abuse and Mental Health Services Administration's Children's Mental Health Initiative grant program interviewed 20 family organizations in Grant Year 2 and 22 organizations in Year 4 to assess their main funding sources, the adequacy of this funding to support the organization, and changes in their funding and financial sustainability over time. Family organizations were supported mainly by mental health authority and other state agency funding and were in early stages of accessing Medicaid funding for peer services. However, many did not have sufficient or sustainable funding to maintain their functions by the grant's end. This work discusses factors that may relate to sustainability and the development of more sustainable funding for these important organizations.

First-Person Accounts of Change Among Young Adults Enrolled in Coordinated Specialty Care for First-Episode Psychosis.

OBJECTIVE: This study investigated how clients of a coordinated specialty care (CSC) program for first-episode psychosis perceived how they changed while attending the program, what the most important changes were, and what mechanisms they believed helped bring about these changes. METHODS: Study participants were 121 individuals (71 men and 50 women) from 35 CSC programs across 22 U.S. states. Responses to the primary questions of interest were procured through a semistructured interview. Data on the length of time in the CSC program were also obtained. The authors used systematic content analyses to analyze these qualitative data. RESULTS: Participants reported a greater number of changes the longer they had received CSC services. Half of the participants reported improved psychiatric symptoms, and this change was the most important for almost one-third (31%; N=32) of the sample. In addition, 39% (N=45) of participants also reported improved social and interpersonal skills, changes in their attitude to and perspective on life, and more treatment engagement. Participants most frequently endorsed therapy as the mechanism underlying their improvement. CONCLUSIONS: Standardized outcome measures allow systematic assessment of clinical and functional status, but they do not provide a nuanced understanding of the underlying mechanisms or the areas of improvement most important to individual clients. The findings reinforce the value of mixed methods in both research and quality improvement efforts as well as for greater integration of patient-selected outcome measures.

Parenting a child with autism in India: narratives before and after a parent-child intervention program.

In many low and middle income countries where autism-related resources are scarce, interventions must rely on family and parents. A 3-month Parent-Child Training Program (PCTP) at Action For Autism, New Delhi, India is aimed at empowering and educating parents, encouraging acceptance of their child, and decreasing parent stress. Forty couples were asked to describe their child with autism using the Five Minute Speech Sample (FMSS), an open-ended narrative method, before and after the program. Parents described a wide range of child behaviors, primarily social and cognitive skills. While all families were of a relatively affluent strata compared to the general Indian population, there were nonetheless significant differences in parents' narratives based on their income levels. Coming into the program, parents with relatively less income focused on their child's immediate and material needs, while higher income parents discussed their parental roles and vision for society. After the PCTP, parents were more likely to reflect on their child beyond comparisons to 'normality,' and beyond the here-and-now. Mothers were more likely than fathers to reflect on themselves and their relationships with their child. Understanding parents' experiences and narratives is essential for the evaluation of interventions such as the PCTP, as Indian parents are incorporated into a growing global network of 'parents of children with autism.'

Adults with autism in India: a mixed-method approach to make meaning of daily routines.

Although individuals with Autism Spectrum Disorder (ASD) have been diagnosed in India for over fifty years, virtually nothing is known about the social circumstances of adults, their daily lives, and their families. Where are adults with autism? How do they spend their time? Who are they with, and what are they doing all day? A mixed-method approach was used to obtain information on daily routines of 54 adults with ASD living in New Delhi, India, and about parent levels of stress associated with these routines during a study collected from January through June, 2013. Whether or not they attended a structured setting during the day (59% did so), adults engaged in some 20 activities both inside and outside their home. Contrary to our expectations, most adults were not "hidden" and were out in public at least on occasion. Higher functioning adults were more likely to attend a structured setting, but parents described challenging behaviors, both adult and parent preference, and lack of options as reasons that adults stayed home. The amount of time adults spent outside their home was not associated with parent reported stress, but stress was significantly higher for mothers who were employed. Most families described adaptation to caring for their adult children. A partnership with an Indian nongovernmental organization provided mechanisms to amplify our research findings, making them meaningful to our participants and others.

Ethical considerations in conducting research on autism spectrum disorders in low and middle income countries.

Autism spectrum disorder (ASD) is being identified in an ever-increasing number of countries, including many that are low or middle income (LMIC). Research conducted in these countries requires awareness of unique ethical issues. Drawing on the experience of two organizations that have been involved in conducting and collaborating in ASD research in India, we describe specific considerations in conducting epidemiological, genetic and treatment studies as well as general principles from the field of multinational clinical research as they apply to the conduct of ASD research. We argue that greater attention to ethical concerns will result in quality studies conducted in LMICs that are also of greatest relevance for families and children with ASD.

Constructing and testing a disability index in a US sample of preschoolers with disabilities.

PURPOSE: To develop and test an index of disability severity in a heterogeneous population of preschoolers with disabilities. METHOD: Using a nationally representative sample of 3,104 children receiving special education services in the US, questions from a parent interview were used to develop an index of disability severity consisting of domains of functioning defined by gradients of severity. Regressions were used to examine the association between 15 functional domains and 8 cognitive, social/behavioural, and functional outcomes. Full and abbreviated versions of this disability index were compared. Correlations with proxy measures of disability in this population were used to establish concurrent validity, and the predictive ability of this measure was compared with that of the federally defined disability categories. RESULTS: Of the 15 domains examined, most were significant predictors of at least two outcomes. A shortened index of only six variables was found to be as effective as the longer version in characterising children's level of severity. The index was significantly correlated with intervention variables such as the age at which children began receiving special education or therapy service, r(2802) = -0.22, p

A national sample of preschoolers with autism spectrum disorders: special education services and parent satisfaction.

The Pre-Elementary Education Longitudinal Study (PEELS) examines the preschool and early elementary school experiences of a nationally representative sample of 3,104 children ages 3-5 with disabilities from 2004 through 2009. This paper describes the special education and related services received by a subsample of 186 preschoolers with autism spectrum disorders (ASD) in 2003-2004 and parental satisfaction with those services. Past research and patterns of litigation suggest that parents of children with ASD are not wholly satisfied with the special education and related services their children receive. In the current study, the authors found many similarities between children with ASD and children with other disabilities in the type of services received under IDEA and in parent satisfaction with these services. Still, some significant differences emerged in the number of services received, the amount of time children with ASD spent in special education settings, and parent satisfaction with the amount of time children spent with typically developing peers. Implications about the importance of parent satisfaction and social validity measures are discussed.

Perceptions and congruence of symptoms and communication among second-generation Cambodian youth and parents: a matched-control design.

This study examined the relationship between perception of communication and report of symptoms among second-generation Cambodian children and their parents using a matched-control design of clinic and community children. Children reported significantly higher symptoms than parents in both samples. Clinic parents reported more symptoms than community parents, but no differences were observed between children, and the mean level of child-reported symptoms was similar to past studies examining clinic populations. Parents reported better communication than children, and community respondents reported better communication than their clinic counterparts. Same-informant communication predicted symptom report. These data suggest that communication is a key factor in understanding symptoms in this group, provide evidence that child perception of communication is particularly important, and that the use of a matched control design might reveal high symptom levels in community samples that are otherwise undetected.

Beliefs about treatment of mental health problems among Cambodian American children and parents.

Beliefs about treatment of mental health problems are a critical area for examination among immigrant and refugee populations. Data on treatment of child problems have been conspicuously absent from the literature. This study examines explanatory models of treatment among 40 second-generation Cambodian children aged 8-18 and their parents in the US. Comparisons of perceptions of intervention for an externalizing problem (gang-related behavior) and an internalizing problem (depression) are made in a group of children who have received mental health services, their parents, and a matched community sample. A significant interaction between respondent and group membership was present in the perception that these problems could be helped, and contrary to past findings among Asian Americans, both children and parents generally endorsed the use of mental health services. Data about actual experiences with mental health services are used to help explain the findings and suggest implications for treatment of Cambodian-American youth.

From symptom recognition to diagnosis: children with autism in urban India.

The period of time between initial recognition of a symptom and initial diagnosis warrants examination because it can serve as a window into broader cultural factors and allow for more immediate treatment. Research on this process among parents of autistic children to date has been useful, but has been limited to families in Western countries, whereas autism occurs all over the world. The current study provides data on the process of initial symptom recognition, help-seeking, and initial diagnosis of a pervasive developmental disorder among 95 families of autistic children in India. The findings suggest that the specific symptoms that parents initially recognize may be associated with the speed with which they receive a diagnosis, and that the saliency of symptoms may be culturally shaped. Environmental, cultural, and socioeconomic factors may also have an impact on whether a parent receives a diagnosis. Implications for professional awareness and increased accuracy of diagnosis are also suggested.

IQ on the rise: the Flynn effect in rural Kenyan children.

Multiple studies have documented significant IQ gains over time, a phenomenon labeled the Flynn effect. Data from 20 industrialized nations show massive IQ gains over time, most notably in culturally reduced tests like the Raven's Progressive Matrices. To our knowledge, however, this is the first study to document the Flynn effect in a rural area of a developing country. Data for this project were collected during two large studies in Embu, Kenya, in 1984 and 1998. Results strongly support a Flynn effect over this 14-year period, with the most significant gains found in Raven's matrices. Previously hypothesized explanations (e.g., improved nutrition; increased environmental complexity; and family, parental, school, and methodological factors) for the Flynn effect are evaluated for their relevance in this community, and other potential factors are reviewed. The hypotheses that resonate best with our findings are those related to parents' literacy, family structure, and children's nutrition and health.

"I speak a different dialect": teen explanatory models of difference and disability.

What do teens with disabilities believe about their conditions, and what do they understand to be the causes, correlates, and consequences of disability? We elicited a cultural explanatory model (EM) of disability from a longitudinal sample of 23 European American adolescents with varied cognitive disabilities and delay. We asked teens how they were similar to or different from others; the name of this difference; its causes, severity, course, effects, associated problems and benefits; and need for treatment. IQ and type of disability strongly affected quality of responses only from the lowest functioning teens. A majority of teens had a reasonably rich and coherent EM, blending typical and disability themes of cultural knowledge and identity. The EM is a window into social context (schools, services, parents, and peers) as well as personal experience. Eliciting explanatory models from teens with disabilities is not only possible but also can enhance understanding of identity, family influence, and appropriate services.

Diagnostic conceptualization of autism among Indian psychiatrists, psychologists, and pediatricians.

Diagnostic criteria for autism and background characteristics used by 937 Indian psychiatrists, psychologists and pediatricians were examined. Participants were asked to rate 18 behaviors as necessary for a diagnosis of autism, helpful but not necessary, or not helpful in a diagnosis of autism, and were asked to provide other information about their experiences with autism. Professionals' experience with diagnosing cases did not vary by profession and, in general, the three professions agreed about the characteristics most necessary for a diagnosis. However, within-group differences were found on the agreement over the usefulness of individual characteristics and amount of experience diagnosing cases as autistic. Comparisons with DSM-III and DSM-IV criteria suggest that Indian professionals may adhere to these systems. Conclusions about diagnosis in a cultural context and areas for future research are suggested.