Search

There are racial/ethnic disparities in the diagnosis of autism spectrum disorder, including delayed diagnosis, discrimination, and a lack of culturally responsive care. The perspectives of caregivers of color are critical in improving delivery of equitable care. We systematically reviewed articles pertaining to experiences with the diagnostic process among caregivers of color. We entered key terms into five databases to identify literature from 2000 to 2021. Fifteen qualitative studies met inclusion criteria, representing 253 caregivers. We used inductive methods to examine themes across racial and ethnic groups and assessed the quality of included studies. Families of color identified multiple factors that negatively affected the diagnostic process. Systems-level factors included long wait lists and financial concerns. Provider-level factors included minimization of caregiver concerns, a "wait and see" approach, biases, and lack of knowledge. Caregivers also described individual (e.g. knowledge) and family factors (e.g. stigma) that delayed diagnosis and complicated the diagnostic process. Communication barriers were commonly reported, which impeded understanding of autism spectrum disorder. Some families described providers, other individuals, community networks, and self-advocacy as facilitators. Interventions targeting systems- (e.g. Medicaid expansion) and provider-level (e.g. increase training in autism spectrum disorder) factors are needed to increase equity in the autism spectrum disorder diagnostic process.

Supportive, informed parenting is critical to improve outcomes of children who experience intellectual and developmental disabilities (IDD). Parents want to learn about their child's condition, needs, and strategies to improve family life. The internet is a valuable resource, but how parents evaluate and apply information is unknown. We conducted focus groups to understand how parents use internet resources to learn about their children with IDD. Parents described using the internet to access information from trusted sources, find examples to apply their knowledge, and seek social support. Social learning theory, which posits that cognitive, behavioral, and social processes influence each other to support real-world learning, could provide a theoretical framework for unifying these findings and for designing efficacious online interventions.

Purpose: Pediatric brain tumor survivors (PBTS) commonly experience mental health challenges, which can be exacerbated during adolescence and emerging adulthood (AEA). We examined survivors and caregivers' perceived need for mental health services and barriers to receiving mental health care. Methods: Families completed surveys to assess perceived need for mental health services, socioemotional impairment, and barriers to mental health services. Survivors were between 13 and 25 years of age and were at least 5 years from diagnosis. Results: Sixty-nine caregiver-PBTS dyads participated, as well as 18 survivors and 20 caregivers who participated individually. Approximately half of survivors were male (n = 57, 52.3%), 85% (n = 93) were White, and their average age was 19.31. Most caregivers (n = 63, 70.8%) and survivors (n = 55, 63.2%) endorsed need for services for the survivors. Adolescents endorsed more barriers related to perceived helpfulness, t(18) = 2.3, p = 0.03, d = 0.54, and effects of services, t(18) = 3.8, p < 0.001, d = 0.88, than their caregivers. Emerging adults, t(34) = 2.4, p = 0.02, d = 0.41, endorsed more content barriers than their caregivers.. Discussion: Both survivors and their caregivers reported obstacles to accessing mental health services such as perceived lack of need, concerns regarding the effectiveness and usefulness of services, and limited knowledge about the content of services. Psychoeducation and psychosocial screening can support families in understanding survivors' need for mental health services. [ABSTRACT FROM AUTHOR]

Introduction: There is significant unexplained variability in behavioral and executive functioning after pediatric traumatic brain injury (TBI). Prior research indicates that there are likely genetic contributions; however, current research is limited. The purpose of this study is to use a systems biology informed approach to characterize the genomic signature related to behavioral and executive functioning ~12 months after moderate through severe TBI in children. Methods: Participants were from two prospective cohorts of children with severe TBI (Cohort #1) and moderate-severe TBI and an orthopedic injury (OI) group (Cohort #2). Participants included 196 children (n = 72 and n = 124 total from each respective cohort), ranging in age between 0--17 years at the time of injury. In total, 86 children had severe TBI, 49 had moderate TBI, and 61 had an OI. Global behavioral functioning assessed via the Child Behavior Checklist and executive function assessed via the Behavioral Rating Inventory of Executive Function at ~ 12 months post injury served as outcomes. To test for a genomic signature, we compared the number of nominally significant (p < 0.05) polymorphisms associated with the outcomes in our systems biology identified genes to a set 10,000 permutations using control genes (e.g., not implicated by systems biology). We used the ToppFun application from Toppgene Suite to identify enriched biologic processes likely to be associated with behavioral and executive function outcomes. Results: At 12 months post injury, injury type (TBI vs OI) by polymorphism interaction was significantly enriched in systems biology selected genes for behavioral and executive function outcomes, suggesting these genes form a genomic signature. Effect sizes of the associations from our genes of interest ranged from .2--.5 for the top 5% of variants. Systems biology analysis of the variants associated with the top 5% effect sizes indicated enrichment in several specific biologic processes and systems. Discussion: Findings indicate that a genomic signature may explain heterogeneity of behavioral and executive outcomes after moderate and severe TBI. This work provides the foundation for constructing genomic signatures and integrating systems biology and genetic information into future recovery, prognostic, and treatment algorithms. [ABSTRACT FROM AUTHOR]

Objective: To identify latent trajectories of IQ over time after pediatric traumatic brain injury (TBI) and examine the predictive value of risk factors within and across recovery trajectories. Method: 206 children ages 3–7 years at injury were included: 87 TBI (23 severe, 21 moderate, 43 complicated mild) and 119 orthopedic injury (OI). We administered intelligence tests shortly after injury (1½ months), 12 months, and 6.8 years postinjury. Latent class growth modeling was used to identify latent subgroups. Separate models examined verbal and nonverbal IQ recovery trajectories following TBI versus OI. Variables included: age at injury, sex, race, socioeconomic status, injury severity, quality of the home environment, family functioning, and parenting style. Results: Both the TBI and OI analyses yielded different growth models for nonverbal (k = 3) and verbal IQ (k = 3). Although all models resulted in 3 latent classes (below average, average, and aboveaverage performance); trajectory shapes, contributors to class membership, and performance within each class varied by injury group and IQ domain. TBI severity was associated with class membership for nonverbal IQ, with less severe injuries associated with higher IQ scores; however, TBI severity did not influence verbal IQ class membership. Parenting style had a more prominent effect on verbal and nonverbal IQ within the TBI than OI trajectories. Conclusions: Findings suggest TBI severity is related to recovery trajectories for nonverbal but not verbal IQ and parenting style has stronger effects on recovery in TBI than OI. Results highlight the importance of parental factors on long-term recovery after TBI. [ABSTRACT FROM AUTHOR]

Background: Preterm birth is associated with adverse mental health outcomes, including internalizing problems, social difficulties and inattention. Interventions are needed beyond infancy and toddlerhood to support children and their families. We examined the feasibility and acceptability of the I‐InTERACT Preterm pilot study, an online parenting intervention for preterm children ages 3–8. Method: Families participated in a weekly intervention comprised of seven sessions with online modules followed by videoconference coaching sessions with a therapist. Following completion of the study, caregivers completed a survey to assess their satisfaction and were asked to participate in a voluntary semi‐structured interview to provide feedback. We anticipated greater than a 50% participation rate (enrollment feasibility) and 75% completion rate (adherence feasibility). We also hypothesized that at least 80% of participants would be satisfied with the intervention (acceptability). Results: Nineteen of 32 families (59%) enrolled in the study, suggesting adequate enrollment feasibility. Feasibility of programme completion (adherence) was lower than anticipated (59%). Regarding satisfaction, all caregivers agreed that the programme's information was relevant to them and their family. Nearly all participants (92%) indicated that they had a better understanding of the effects of preterm birth on behaviour, that they enjoyed the programme, that it met their expectations and that they recommend the programme to others. In qualitative interviews, caregivers expressed satisfaction with the content, skills they learned, and receiving direct coaching. Caregivers suggested improvements to increase intervention feasibility and skill implementation, including offering biweekly sessions and more hands‐on coaching. Conclusion: Our largely satisfactory acceptability rates suggest the value of and need for a parenting intervention for children born preterm past the initial period of early development. Future directions include modifying the intervention in response to caregiver feedback to improve recruitment, engagement and adherence. [ABSTRACT FROM AUTHOR]

Parent behaviors moderate the adverse consequences of pediatric traumatic brain injury (TBI); however, it is unknown how these moderating effects change over time. This study examined the moderating effect of observed parent behaviors over time since injury on the relation between TBI and behavioral outcomes. Participants included children, ages 3-7 years, hospitalized for moderate (n = 52) or severe (n = 20) TBI or orthopedic injury (OI; n = 95). Parent-child dyads were videotaped during structured task and free play conditions, and parents completed child behavior ratings. Linear mixed models using a lagged, time-varying moderator analysis examined the relationship of observed parent behaviors at the baseline, 6-month, and 12-month assessments to child behavior problems at 6 months, 12 months, and 18 months postinjury, after controlling for preinjury levels of child behavior problems. The effect of TBI on behavior was exacerbated by less favorable parent behaviors, and buffered by more favorable parent behaviors, in children with severe TBI over the first 12 months postinjury. By 18 months postinjury, however, the moderating effect of parent behaviors diminished, such that children with severe TBI showed more behavior problems relative to children with moderate TBI or OI regardless of parent behaviors or in response to parent behaviors that were initially protective. The results suggest that the moderating effects of the family environment are complex and likely vary in relation to both recovery and developmental factors, with potentially important implications for targets and timing of intervention.

Background Pediatric brain tumor survivors (PBTS) are at risk of worse quality of life (QOL) due to the impact of neurotoxic treatments on the developing nervous system. Parenting factors such as protectiveness have been linked to worse QOL in childhood cancer survivors generally, but have yet to be explored for PBTS. We examined whether parenting behaviors moderated the association between neurotoxic treatment and QOL for PBTS. Methods PBTS (n  = 40; ages 10–25) and their caregivers (n  = 47) completed measures of parenting behaviors including warmth (support/connectedness) and psychological control (protectiveness) and QOL. We divided the sample into moderate/high and low neurotoxicity groups based on chart review using the Pediatric Neuro-Oncology Rating of Treatment Intensity and examined moderator effects. Results Survivor-reported primary caregiver warmth moderated the relationship between neurotoxicity and caregiver-reported QOL. Moderate/high neurotoxicity was associated with lower caregiver-reported QOL only when survivor-reported primary caregiver warmth was low, P  = .02. Similar results were found for survivor-reported QOL. Caregiver-reported psychological control moderated the association between neurotoxicity and caregiver-reported QOL such that neurotoxicity only affected QOL at high levels of psychological control, P  = .01. Conclusions Heightened associations between parenting and QOL in the context of neurotoxic treatments underscore the need to better support PBTS. Findings are consistent with research suggesting that family factors may be particularly important for children with other neurological insults. Limitations include cross-sectional design and a small/heterogeneous clinical sample with low ethnic/racial diversity. Prospective studies are needed to refine evidence-based screening and develop psychosocial intervention strategies to optimize QOL for PBTS and their families. [ABSTRACT FROM AUTHOR]