Cultural adaptation of an intervention for caregivers of young autistic children: Community members' perspectives.

Caregivers of autistic children in low-to-middle-income countries experience many barriers to access resources to support their child's development. Caregiver training is considered an evidence-based practice and may be a cost-effective way to support caregivers of autistic children in such settings. This study focuses on the cultural adaptation of Parents Taking Action (PTA; Magaña et al., Family Process, 56, 57-74, 2017) to support caregivers of autistic children in Paraguay. We conducted focus groups and individual interviews with 28 caregivers, autistic individuals, and professionals in Paraguay to understand caregivers' needs and to explore needed cultural adaptations of PTA to achieve contextual fit. Participants identified caregivers' need for accurate and reliable information, strategies to support children's growth, and emotional support and strategies to manage stress. Additionally, participants provided recommendations for adapting PTA considering the dimensions within the Cultural Adaptation Checklist (Lee et al., International Journal of Developmental Disabilities, 2023). This study is the first step in the iterative process of culturally adapting an intervention and the process described in this study may be appropriate for culturally adapting other interventions.

The Cultural Adaptation of a Transition Program for Latino Families of Youth with Autism Spectrum Disorder.

During the transition to adulthood, effective and culturally relevant supports are critical for families of youth with autism spectrum disorder (ASD). There is a dearth of documented program development and research on supports for Spanish-speaking Latino families during this life stage. The present work describes the cultural adaptation process of an evidence-based transition program for Latino families of youth with ASD. A model of the actions necessary to meaningfully conduct a cultural adaptation in this context is described. After implementing the culturally adapted program titled Juntos en la Transición with five Spanish-speaking families, parents reported high social validity of the program through surveys and interviews. The cultural adaptation process followed in this work is important for the further development of programs that address the transition needs of Latino youth with ASD and their families. Our impressions may also be useful to those who aim to develop culturally sensitive and ecologically valid multifamily group intervention programs for families from cultural and linguistic minority groups.

Durante la transición a la adultez, las adaptaciones eficaces y culturalmente relevantes son fundamentales para las familias de jóvenes con trastorno del espectro autista (TEA). Hay una escasez de investigaciones y desarrollo de programas documentados sobre las adaptaciones para las familias latinas de habla hispana durante esta etapa de la vida. El presente trabajo describe el proceso de adaptación cultural de un programa de transición de base fáctica para familias latinas de jóvenes con TEA. Se describe un modelo de las medidas necesarias para llevar a cabo significativamente una adaptación cultural en este contexto. Después de implementar el programa adaptado culturalmente y titulado Juntos en la Transición con cinco familias de habla hispana, los padres informaron una alta validez social del programa mediante encuestas y entrevistas. El proceso de adaptación cultural seguido en este trabajo es importante para el futuro desarrollo de programas que aborden las necesidades de transición de los jóvenes latinos con TEA y sus familias. Nuestras impresiones también pueden ser útiles para aquellos que desean desarrollar programas de intervención en grupos multifamiliares ecológicamente válidos y culturalmente adaptados para familias de grupos culturales y lingüísticos minoritarios.

Implementing an intervention to address challenging behaviors for autism spectrum disorder in publicly-funded mental health services: Therapist and parent perceptions of delivery with Latinx families.

OBJECTIVES: As implementation of evidence-based practices (EBPs) in publicly funded children's mental health services has become increasingly common, concerns have been raised about the appropriateness of specific EBPs to the diverse client populations served in these settings. Exploring stakeholder perspectives can provide direction for refinements of EBPs when delivered with Latinx families. The current study used qualitative methods to examine therapist and Latinx parent perceptions of therapist-parent interactions and the intervention process when therapists are trained to deliver AIM HI (An Individualized Mental Health Intervention for ASD), a structured, parent-mediated intervention for autism spectrum disorder (ASD). METHOD: Therapist and parent participants were a subset of participants from a large-scale community effectiveness trial. Perceptions were gathered through focus groups with therapists (n = 17) and semistructured interviews with Latinx parents (n = 29). Therapists were 94% female, 35% Latinx, and 47% were fluent in Spanish. Parents were 93% female, 100% Latinx, and 66% preferred Spanish. A coding, consensus, co-occurrence and comparison approach was used to analyze data. RESULTS: Three primary themes emerged: (a) limited parental knowledge about ASD and the need to address knowledge gaps; (b) differing perceptions regarding parental participation in treatment; and (c) identification of influences on parent-therapist interaction, including the cultural value of respeto/deference (emphasized by therapists), and importance of personalismo/personal connection (emphasized by parents). CONCLUSIONS: The themes provide specific direction for enhancements to AIM HI to maximize engagement of Latinx families. The themes also have broader implications for intervention development and community implementation including refinement of EBPs to facilitate fit and sustained implementation. (PsycINFO Database Record (c) 2018 APA, all rights reserved).

Brief report: Evaluation of an adapted youth version of Parents Taking Action for parents of pre/adolescents with autism spectrum disorder in Colombia.

LAY ABSTRACT: We evaluated the efficacy of the youth version of the program Parents Taking Action in Bogota, Colombia. This program aims to provide information, resources, and strategies about topics of puberty, sexuality, and adolescence for parents of preadolescents with autism spectrum disorder. We examined whether parents in the treatment groups would improve in levels of knowledge, empowerment, self-efficacy, and use of strategies compared to the control group. We recruited two groups of Colombian parents of pre/adolescent with autism spectrum disorder between the ages of 10 and 17 in the city of Bogota, Colombia, through a community-based organization. One of the groups received the intervention and the other served as a control group. Parents in the control group received the intervention after the 4-month follow-up. The intervention included four 3-h weekly sessions in which the curriculum with nine topic areas was delivered providing parents with a space to practice strategies, learn from others, and set goals. Parents in the intervention group reported significantly greater knowledge, self-efficacy, use of strategies, and empowerment compared to the control/waitlist group. Parents were also highly satisfied with the content, materials, and peer connections that the program offered. The program has potential for high impact as information is scarce and parents do not have resources related to the complicated developmental stages of pre/adolescence. The program shows promise as an efficacious tool for community organizations and health providers to provide extra support to families of youth with autism spectrum disorder.

Reducing Depressive Symptoms Among Latina Mothers of Autistic Children: A Randomized Controlled Trial.

This study examines the intervention effect of a culturally tailored parent education program in reducing depressive symptoms among Latina mothers of autistic children. In this two-site randomized waitlist-control study (n = 109 mother-child dyads), a peer-to-peer mentoring (promotora) model was used to deliver an intervention that was designed to increase mothers' self-efficacy and use of evidence-based strategies. We assessed mothers' depressive symptom (CES-D) scores at three time points and used linear mixed models to determine whether their scores significantly changed from baseline to postintervention (Time 2) and at 4 months postintervention (Time 3). Results show that mothers in the intervention group reported a significant decrease in mean depressive symptom scores at Time 2 and that the effect was maintained at Time 3 with intermediate to medium effect sizes. There were no differences in results across sites. Findings suggest that Parents Taking Action, a culturally tailored intervention led by peer mentors, showed a significant effect both immediately after the intervention and 4 months postintervention in reducing depressive symptoms among Latina mothers of autistic children.

Racial and ethnic disparities in obesity and contributions of social determinants of health among boys with autism spectrum disorder.

Children with autism spectrum disorders (ASD) are at greater obesity risk compared to typically developing peers. Although many potential risk factors for this relationship have been identified, the causal chain must be better understood, particularly modifiable social determinants of obesity risk in ASD, and especially for children with ASD from minoritized racial/ethnic groups. We aimed to: (1) examine racial/ethnic disparities in obesity status in boys with ASD; (2) assess associations between social determinants of health and obesity status; and (3) understand if social determinants of health factors mediate the relationship between race/ethnicity and obesity status for these youth. We used data for 124 boys, aged 9-10 with ASD enrolled in an ongoing longitudinal study. Social determinants of health explored included socioeconomic position, Area Deprivation Index, neighborhood safety, food and housing insecurity, and racial/ethnic discrimination. The racial/ethnic distribution was: 17.1% Black, 14.6% Latino, and 68.3% White; average age was 10 years. Both Black (PR 2.57, 95% CI: 1.26-5.26) and Latino boys (PR 2.08, 95% CI: 1.08-4.03) with ASD were more likely to be obese than their White peers. While there were significant differences in some social determinants of health by race/ethnicity, only food insecurity mediated associations between race/ethnicity (Black vs. White) and obesity. The striking disparities in obesity and differences in social determinants of health between Black and Latino children with ASD compared to White children emphasize the need to identify factors that contribute to healthy weight among these children and to address these factors in practice.

Associations between parenting strategies and BMI percentile among Latino children and youth with intellectual and developmental disabilities.

Introduction: Maintaining healthy weight is a challenge for all children, and particularly for children with IDD compared to nondisabled children and for Latino children compared to non-Latino White children. Parenting practices related to food intake and physical activity have been found to be important in maintaining children's weight. In this study, we describe the prevalence of overweight and obesity status among Latino children with IDD and their maternal caregivers and determine the relationship between food and physical activity parenting practices and childhood obesity among Latino children with IDD. Methods: We interviewed 94 Latino parent/child dyads and collected information about parenting practices, home environment, and parent and child height and weight using standardized measures. Parent body mass index (BMI) and child BMI percentile were calculated from height and weight. Results: The combined overweight/obesity status for children in our sample was high (60.3%) compared to national rates among nondisabled Latino children (56%) and non-Latino White children with autism (37%). Contrary to research on nondisabled children, we found that greater parental use of controlling dietary strategies was associated with lower BMI percentile in Latino children with IDD. These findings may be indicative of the fact that children with IDD tend to have unique dietary behaviors that warrant more disability and culturally sensitive strategies. Discussion: Our findings suggest that overweight and obesity is especially prevalent for Latino children with IDD and that more research is needed on family factors that promote health in Latino families of children with IDD.

Barriers to Service Access for Immigrant Families of Children With Developmental Disabilities: A Scoping Review.

This scoping review explores (a) barriers faced by immigrant families of children with intellectual and developmental disabilities (IDD) when accessing healthcare-related services in the United States, (b) where research stands based on the health disparity research framework, and (c) implications for future health disparities research with this population. Our scoping review found 26 empirical studies published between 2000 and 2020 that met our inclusion criteria. Data were extracted and synthesized based on the stages of research outlined in the health disparity research framework. Overall, immigrant families experienced barriers on multiple levels including patient, provider, and healthcare system levels. Studies focusing on detecting and reducing disparities are emerging. We conclude with recommendations for future research and practice with immigrant families of children with IDD.

Revisiting an RCT study of a parent education program for Latinx parents in the United States: Are treatment effects maintained over time?

LAY ABSTRACT: Background: We conducted a follow-up investigation of a two-site randomized controlled trial in the United States. We examined whether the treatment effects in a culturally tailored parent education program for Latinx families of children with autism spectrum disorder were maintained over time.Methods: Using linear mixed models, we compared differences in parent and child outcomes across three timepoints: baseline, 4 months after baseline (Time 2), and 8 months after baseline (T3). Parent outcomes included family empowerment, self-reported confidence in, and frequency of using evidence-based strategies. Child outcomes included parent-reported challenging behaviors, social communication impairments, and the number of services received. Participants were 109 Latina mothers (intervention = 54, control = 55) of children with autism spectrum disorder.Results: After intervention at both Time 2 and Time 3 in both sites, mothers in the intervention groups reported significantly greater confidence in and frequency of using evidence-based strategies, and that their child received significantly more services. We also found that there were treatment differences across the two study sites in several outcomes.Implications: The intervention for Latinx parents of children with autism spectrum disorder was efficacious and could be maintained, and that site-specific policy and service differences may need to be examined in future research to inform dissemination and implementation.

Interventions for Health Promotion and Obesity Prevention for Children and Adolescents with Developmental Disabilities: a Systematic Review.

This systematic review evaluated interventions and relevant outcomes for health promotion and obesity prevention among children and adolescents with developmental disabilities (DD). Twenty-one studies including randomized control trials (n= 9) and quasi-experimental studies (n=12) published between 2010 and 2021 met inclusion criteria related to participant characteristics, intervention type, and child obesity-related outcomes. Five types of intervention programs were identified: aerobic and strength training, sport-based physical activity, aquatic exercise, active video gaming, and diet and lifestyle. Whereas analysis of intervention outcomes, efficacy, and study rigor showed mixed results and weak evidence of effective interventions, this review identified gaps in the literature, promising strategies for addressing obesity in children with DD, and implications for practice and future research. Supplementary Information: The online version contains supplementary material available at 10.1007/s40489-022-00335-5.

Recommendations for Diversifying Racial and Ethnic Representation in Autism Intervention Research: A Crossover Review of Recruitment and Retention Practices in Pediatric Mental Health.

Disparities in diagnosis and access to healthcare and therapeutic services are well-documented for children with autism spectrum disorder (ASD) from minoritized races and ethnicities, but there is little empirical research to guide the selection and implementation of interventions and practices that will effectively support racially/ethnically diverse children with ASD and their families. This cross-over systematic review summarizes parent-mediated intervention research of children with or at risk for mental health disorders to identify potentially effective recruitment and retention strategies for diverse participants in parent-mediated intervention research for children with autism. Electronic database keyword, lead author name searches in PyschNet, MEDLINE, and ancestral searches were conducted to identify 68 relevant articles that used experimental designs to evaluate the effects of parent-mediated interventions on children with or at risk for mental health disorders. Articles were coded for participant demographics; intervention setting and type, recruitment and retention strategies, cultural adaptation of intervention, and reported attrition. Findings are discussed and applied to practices in autism parent-mediated intervention research. Suggestions for future research and limitations are discussed.

Impact of COVID-19 on the Mental Health and Well-Being of Latinx Caregivers of Children with Intellectual and Developmental Disabilities.

The COVID-19 pandemic has impacted the entire world in unprecedented ways. However, populations that have had a history of marginalization have experienced a more profound impact. One such group is Latinx families of children with intellectual and developmental disabilities (IDD) in the Unites States. In this study, we used a mixed methods approach to explore the impact of the pandemic on the mental health and well-being of Latinx caregivers of children with IDD. Specifically, we (1) identified which social determinants of health are correlated with maternal caregivers perceived general health, mental health, and well-being; (2) explored the impact of the pandemic on families' overall eating and physical activity routines; and (3) identified emergent themes from caregivers' experiences during the pandemic. Thirty-seven Latinx caregivers participated in three interviews in which several validated instruments were administered. The results indicated that perceived social support, annual family income, food security, and receipt of financial benefits were correlated with fewer depressive symptoms. Annual family income was also significantly correlated with perceived general health. Most caregivers reported that the pandemic had placed a strain on their economic situation; increased their isolation; and disrupted their child's therapeutic supports, online education, eating routines, and engagement in physical activity. Meanwhile, some caregivers reported positive changes as a result of the pandemic. Implications for future research and practice are discussed.

Latina Mothers Caring for a Son or Daughter with Autism or Schizophrenia: Similarities, Differences and the Relationship Between Co-Residency and Maternal Well-Being.

In this cross-sectional study, we examined similarities and differences in depressive symptoms and psychological well-being between Latina maternal caregivers of persons with autism (N=29) and schizophrenia (N=33). We also explored predictors of maternal outcomes and the relationship of co-residence to them. Regression analysis found that mothers of adults with schizophrenia had lower levels of psychological well-being than mothers of youth or adults with autism. For the overall sample of mothers, co-residing with their son or daughter was significantly related to lower levels of depressive symptoms. Qualitative analysis of the nine mothers who lived apart from their son or daughter revealed that extreme behavior problems of the son or daughter and poor maternal health contributed to living apart. Despite overcoming these challenges, mothers expressed a profound sense of sadness about their son or daughters' living arrangements.

Perceptions of Family Problems and Pessimism Among Latina and Non-Latina White Mothers Raising Children with Autism Spectrum Disorder.

To address the limited research on diverse families of children with ASD, we examined the impact of ASD on 46 Latina and 56 non-Latina White mothers from a resiliency perspective. We explored perceptions of family problems, optimism and pessimism among mothers of child with ASD between 1 and 22 years old. Mothers were recruited through support groups and listservs. Univariate and multivariate analyses were conducted. Results indicated fewer perceived family problems and less pessimism about the child's future among Latina mothers. We found maternal optimism and family cohesion were associated with perceived family problems and mother's pessimism about the child's future. Understanding the impact of ASD among diverse families will aid in developing appropriate services that enhances family strengths.

Providers' Guidance to Parents and Service Use for Latino Children With Developmental Disabilities.

To better understand disparities between Latino and White children with autism or other developmental disabilities (ASD/DD), we examined whether Latino ethnicity predicted the number of specialty care services received by children with severe functional limitations depending on medical providers' responses to parents' initial concerns about their child's development. Through linkage of the Pathways and NS-CSHCN datasets, we found ethnic disparities in the receipt of specialty services associated with providers' responsiveness to parent-reported concerns among children with ASD/DD. Among children with significant functional limitations, Latino children whose parents received passive/reassuring responses from their providers were less likely to receive specialty services than White children with ASD/DD. Providers' guidance to parents may be a promising point of intervention for future disparity reduction efforts.

A Randomized Waitlist-Control Group Study of a Culturally Tailored Parent Education Intervention for Latino Parents of Children with ASD.

This two-site randomized waitlist-control study (n = 96 mother-child dyads) examined the efficacy of a psychoeducation program as compared to usual care to empower Latina mothers and improve their confidence in and use of evidence-based practices (EBPs) for their children with ASD. A secondary aim was to improve child outcomes. Compared to control group, we found significant positive changes in the treatment group in maternal confidence of and frequency in use of EBPs, child social communication and the number of EB services the child received. We found no significant differences for the treatment group in family empowerment or in child challenging behaviors. This RCT presents evidence of an efficacious intervention for Latino children with ASD and their mothers in California and Illinois.

Health Services Use and Costs for Americans With Intellectual and Developmental Disabilities: A National Analysis.

Health services and associated costs for adults with intellectual and developmental disabilities (IDD) were nationally profiled and the predictors of high expense users statistically modeled. Using linked data from the National Health Interview Survey and Medical Expenditure Panel Survey for the years 2002 through 2011, the study found a mixed pattern of differences in rates of service use and costs when compared to the general population depending upon personal characteristics, health status, and type of health care service. Prescription medication costs were the primary driver of total health care expenditures for Americans with IDD. The presence of secondary chronic health conditions and poor mental health status were the consistent predictors of high expense users across types of health care. Study results are discussed in terms of implications for more nuanced evaluations of health care costs and need for recurring surveillance of health care for Americans with IDD in the years following passage of the Patient Protection and Affordable Care Act.

Psychological distress among latino family caregivers of adults with schizophrenia: the roles of burden and stigma.

OBJECTIVE: Little research has focused on the mental health of Latino caregivers with a relative with schizophrenia, despite data showing that up to three-quarters of Latino persons with schizophrenia live with their families. This study examined the relation between caregivers' mental health and perceived burden and stigma and characteristics of the patient and caregiver. METHODS: Interviews were conducted in the language of preference (Spanish or English) in Wisconsin, California, and Texas with 85 Latinos caring for an adult with schizophrenia. Measures included the Center for Epidemiologic Studies-Depression Scale, the Zarit Burden Scale, and the Greenley Stigma Scale. RESULTS: General population studies of Mexican Americans have found that between 12% and 18% meet the cutoff for being at risk of depression; however, 40% of the sample met this criterion. Younger caregiver age, lower levels of caregivers' education, and higher levels of the patients' mental illness symptoms were predictive of higher levels of caregivers' depressive symptoms. Caregivers' perceived burden mediated the relation between patients' psychiatric symptoms and caregivers' depression. Caregivers' perceived stigma was significantly related to caregivers' depressive symptoms, even when the analyses statistically adjusted for psychiatric symptoms and demographic variables. CONCLUSIONS: The high rates of depressive symptoms among Latino families caring for a relative with schizophrenia suggest that interventions should include attention to the mental health and recovery of family caregivers in addition to the patient's recovery. Younger Latino caregivers and those with lower levels of education are particularly at risk of depression.

Diagnostic Utility of the ADI-R and DSM-5 in the Assessment of Latino Children and Adolescents.

Latino children in the US are systematically underdiagnosed with Autism Spectrum Disorder (ASD); therefore, it is important that recent changes to the diagnostic process do not exacerbate this pattern of under-identification. Previous research has found that the Autism Diagnostic Interview-Revised (ADI-R) algorithm, based on the Diagnostic and Statistical Manual of Mental Disorder, Fourth Edition, Text Revision (DSM-IV-TR), has limitations with Latino children of Spanish speaking parents. We evaluated whether an ADI-R algorithm based on the new DSM-5 classification for ASD would be more sensitive in identifying Latino children of Spanish speaking parents who have a clinical diagnosis of ASD. Findings suggest that the DSM-5 algorithm shows better sensitivity than the DSM-IV-TR algorithm for Latino children.

The health and well-being of black mothers who care for their adult children with schizophrenia.

This study compared the mental and physical health of two groups of black mothers aged 55 years and older: those who were providing care for their adult child with schizophrenia or schizoaffective disorder (N=30) and those who did not have a child with mental illness (N=263). The only demographic variable that was found to differ between the two groups was that the women who were providing care for their adult child with mental illness had more children than the women in the comparison group. Both groups of women had similar mental health status. However, the mothers who were providing care for their adult children with mental illness had higher rates of chronic health conditions, such as high blood pressure, arthritis, and eye problems.