Personalized Mobile Health-Enhanced Cognitive Behavioral Intervention for Maternal Distress: Examining the Moderating Role of Adverse Childhood Experiences.

BACKGROUND: Maternal history of trauma is a risk factor for distress during pregnancy. The purpose of this paper was to examine the theorized differential impact of a cognitive behavioral intervention (Mothers and Babies Personalized; MB-P) on maternal distress and emotional regulation for those with ≥ 1 adverse childhood experiences (ACEs; vs no ACEs) from pregnancy to 3 months postpartum. METHODS: Between August 2019 and August 2021, eligible pregnant individuals aged ≥ 18 years, < 22 weeks' gestation, and English-speaking were recruited from 6 university-affiliated prenatal clinics. Participants (N = 100) were randomized to MB-P (n = 49) or control (n = 51). Analyzable data were collected for 95 participants. Analyses tested progression of change (slope) and at individual timepoints (panel analysis) for perinatal mental health outcomes. RESULTS: The majority of participants (n = 68, 71%) reported experiencing > 1 ACE (median = 1, range: 0-11). Participants demonstrated significant differential effects for depressive symptoms in absence of ACEs (standardized mean differences [SMD] = 0.82; 95% confidence interval [CI] = [0.13-1.51]) vs in presence of ACEs (SMD = 0.39; 95% CI = [-0.20 to 0.97]) and perceived stress in absence of ACEs (SMD = 0.92; 95% CI = [0.23-1.62]) vs in presence of ACEs (SMD = -0.05; 95% CI = [-0.63 to 0.53]). A panel analysis showed significantly reduced depressive symptoms postintervention and increased negative mood regulation at 3 months postpartum for individuals with ACEs. CONCLUSIONS: Findings support effectiveness of the MB-P intervention to reduce prenatal distress for all pregnant individuals. Preliminary exploration suggests the possibility that individuals with ACEs may benefit from enhanced trauma-informed content to optimize the effects of a perinatal intervention.

Parent Beliefs About the Causes of Learning and Developmental Problems Among Children With Autism Spectrum Disorder: Results From a National Survey.

This study aimed to assess variation in parent beliefs about causes of learning and developmental problems in U.S. children with autism spectrum disorder, using data from a nationally representative survey. Results showed that beliefs about a genetic/hereditary cause of learning/developmental problems were most common, but nearly as many parents believed in exposure causes. Forty present of parents had no definite causal beliefs. On multivariate analysis, parents who were non-White, publicly insured or poor were more likely than other parents to endorse exposure causes, or less likely to endorse genetic causes, compared to other parents. Further research should assess how these beliefs modify health care quality or services use.

Variation in Educational Services Receipt Among US Children With Developmental Conditions.

OBJECTIVE: To examine the relationship between ease of access to needed community-based services (ease of access) and educational services receipt, and variation in educational services receipt by sociodemographic and need factors among a nationally representative sample of children with autism spectrum disorder (ASD), developmental delay (DD), and/or intellectual disability (ID). METHODS: Data from the 2009-2010 National Survey of Children with Special Health Care Needs were linked to the 2011 Survey of Pathways to Diagnosis and Services on a sample of 3502 US children aged 6 to 17 years with ASD, DD, and/or ID. Descriptive statistics, chi-square tests, and multivariable logistic regression models were used to determine associations of educational services receipt with ease of access and sociodemographic and need factors. RESULTS: Among children with developmental conditions, nearly half (49.7%) lacked easy access to services, and 16.9% did not have an individualized education program (IEP). Among children with an IEP, those with ease of access were more likely to have an IEP that addressed parent concerns about the child's development and education than those unable to easily access services (adjusted odds ratio 2.77; 95% confidence interval 1.71-4.49). Need factors, including functional limitations status, care coordination need, developmental condition type, and early intervention receipt, were significantly associated with educational services receipt. CONCLUSIONS: Cross-systems initiatives facilitating service access remain important to ensuring the developmental needs of children with ASD, DD, and/or ID are met. Increased interprofessional collaboration promoting quality educational services receipt for children diagnosed with developmental conditions may further reduce disparities.

Parental concerns, provider response, and timeliness of autism spectrum disorder diagnosis.

OBJECTIVES: To assess differences between child age at first parental concern and age at first parental discussion of concerns with a health care provider among children with autism spectrum disorder (ASD) vs those with intellectual disability/developmental delay (ID/DD), and to assess whether provider response to parental concerns is associated with delays in ASD diagnosis. STUDY DESIGN: Using nationally representative data from the 2011 Survey of Pathways to Diagnosis and Treatment, we compared child age at parent's first developmental concern with age at first discussion of concerns with a provider, and categorized provider response as proactive or reassuring/passive, among 1420 children with ASD and 2098 children with ID/DD. In the children with ASD, we tested the association between provider response type and years of diagnostic delay. RESULTS: Compared with children with ID/DD, children with ASD were younger when parents first had concerns and first discussed those concerns with a provider. Compared with parents of children with ID/DD, parents of children with ASD were less likely to receive proactive responses to their concerns and more likely to receive reassuring/passive responses. Among children with ASD, those with more proactive provider responses to concerns had shorter delays in ASD diagnosis compared with those with passive/reassuring provider responses. CONCLUSION: Although parents of children with ASD have early concerns, delays in diagnosis are common, particularly when providers' responses are reassuring or passive, highlighting the need for targeted improvements in primary care.

Parent health beliefs, social determinants of health, and child health services utilization among U.S. school-age children with autism.

OBJECTIVE: Substantial variation exists in autism spectrum disorder (ASD) care by race, ethnicity, and socioeconomic status; however, the role of parent health beliefs in this variation is poorly understood. Study goals were to (1) examine variation in parent beliefs about ASD prognosis and treatment according to social determinants of health (SDH) and (2) assess whether this variation was associated with variable health services utilization, among 1420 children with special health care needs (CSHCN) having ASD. METHODS: We used linked data from the 2011 Survey of Pathways to Diagnosis and Treatment and the 2009-2010 National Survey of Children with Special Health Care Needs. Bivariate and multivariate analyses assessed variation in parent beliefs according to race/ethnicity, household income, and parent educational attainment. Further analyses assessed whether variation in beliefs was associated with the use of psychotropic medication, traditional therapy, or complementary/alternative therapy for ASD. RESULTS: Parents of lower educational attainment or who had lower income were more likely to think that their child's condition was a mystery. Near-poor families were less likely to believe that they had the power to change the child's condition. Parents of minority children were more likely than white children to view their child's condition as temporary. However, these differences in beliefs only had modest associations with variation in use of the health services analyzed. CONCLUSIONS: Some SDH-related variation exists in health beliefs among parents of children with ASD, but these differences may not be the main factors accounting for ASD health care disparities.

Conceptualization of autism in the Latino community and its relationship with early diagnosis.

OBJECTIVE: Early identification of autism spectrum disorders (ASD) has been linked to improved long-term developmental outcomes. However, Latino children are diagnosed later than white non-Latino children. We aimed to qualitatively assess the understanding and conceptualization of ASD in the Latino community to understand potential community barriers to early diagnosis. METHODS: We conducted 5 focus groups and 4 qualitative interviews with 30 parents of typically developing Latino children in Oregon. Participants were asked structured questions concerning video vignettes that follow a Latina mother from the time she begins to worry about her 3-year-old son's behaviors to the time he receives an ASD diagnosis. Focus groups and interviews were audio-recorded, transcribed, and independently coded. Coded data were analyzed using thematic analysis. RESULTS: Many Latino families in the study had not heard of ASD or had little information about it. Families sometimes assumed that ASD red flags were normal or could be attributed to family dysfunction. Families also had concerns about provider communication and access to language services. Having a child with a developmental delay was associated with embarrassment, rejection, and family burden, making it difficult for parents to raise developmental concerns with providers. CONCLUSIONS: Pediatric providers should not assume that Latino parents have heard of ASD or know its symptoms. Providers should be aware that parents may be reluctant to mention concerns because of cultural factors. The health care system needs to improve resources for Latino parents with limited English proficiency. Policies should encourage the use of developmental screening in primary care.

Latino parents' perspectives on barriers to autism diagnosis.

OBJECTIVE: Latino children are diagnosed with autism spectrum disorders (ASDs) at older ages and at the point of more severe symptoms. We sought to qualitatively describe community, family, and health care system barriers to ASD diagnosis in Latino children. METHODS: Five focus groups and 4 qualitative interviews were conducted with 33 parents of Latino children previously diagnosed with an ASD. Participants described Latino community perceptions of autism and barriers they experienced during the diagnostic process. Sessions were audiorecorded and transcribed. Transcripts were coded by 2 researchers, and data were analyzed using thematic analysis. RESULTS: Parents reported low levels of ASD information and high levels of mental health and disability stigma in the Latino community. Parents had poor access to care as a result of poverty, limited English proficiency, and lack of empowerment to take advantage of services. Providers sometimes dismissed parents' concerns. The ASD diagnostic process itself was slow, inconvenient, confusing, and uncomfortable for the child. These factors led many parents to normalize their child's early behaviors, deny that a problem existed, and lose trust in the medical system. CONCLUSIONS: Additional educational outreach to Latino families, destigmatization of ASD, streamlining the ASD diagnostic process, and providing additional support to Latino parents of at-risk children may decrease delays in ASD diagnosis among Latino children.