Identifying Needs of Ethiopian and Eritrean American Parents of Autistic Children.

Collectively, Ethiopians and Eritreans represent one of the largest African immigrant groups in the US, yet no research to date exists on families from these communities raising autistic children. The purpose of our study was to examine the experiences of Ethiopian and Eritrean families of autistic children including experiences (1) receiving the autism diagnosis and interacting with healthcare providers, (2) obtaining services and supports for children (including satisfaction with services and barriers to care), and (3) accessing services and supports for caregivers and families (including needs and barriers to care). Ethiopian and Eritrean parents (N = 51) raising autistic children in the US completed an online survey. Parents reported limited prior knowledge of autism within their communities and had varied experiences with healthcare providers through the diagnostic process. They endorsed barriers to accessing care for their child and family supports (such as provider shortages and cost of services), service needs, and dissatisfaction with school-based and behavioral supports. Many parents reported a negative impact on workforce participation in order to meet their child's needs. Parents identified needs that would benefit their autistic children and families, such as accessible support groups to obtain relevant information. To our knowledge, this is the first systematic study exploring the experiences of Ethiopian and Eritrean families raising autistic children in the US. We discuss implications of our findings and recommendations for culturally responsive care.

Enhancing pre-employment transition services: A type 1 hybrid randomized controlled trial protocol for evaluating WorkChat: A Virtual Workday among autistic transition-age youth.

Autistic transition-age youth experience high rates of unemployment and underemployment, in part due to the social challenges they may face when having conversations in the workplace. In an effort to help enhance conversational abilities in the workplace, our collaborative team partnered to develop WorkChat: A Virtual Workday. Specifically, our team of scientists, community partners, and diversity and inclusion experts participated in a community-engaged process to develop WorkChat using iterative feedback from autistic transition-age youth and their teachers. With initial development complete, this study reports on the protocol that our collaborative team developed, reviewed, and approved to conduct a randomized controlled trial (RCT) to evaluate the real-world effectiveness and initial implementation process outcomes of WorkChat when integrated into post-secondary pre-employment transition services (Pre-ETS). Our aims are to: 1) evaluate whether services-as-usual in combination with WorkChat, compared to services-as-usual with an attention control, enhances social cognition and work-based social ability (between pre- and post-test); reduces anxiety about work-based social encounters (between pre- and post-test), and increases sustained employment by 9-month follow-up; 2) evaluate whether social cognitive ability and work-based social ability mediate the effect of WorkChat on sustained employment; and 3) conduct a multilevel, mixed-method process evaluation of WorkChat implementation.

Pilot Trial of a Peer-to-Peer Psychoeducational Intervention for Parents of Black Children Awaiting a Developmental Evaluation.

OBJECTIVE: This study examined the short-term impact on child, family, and parent outcomes of a peer-to-peer psychoeducational intervention, Parents Taking Action (PTA) for Black families of children awaiting developmental-behavioral pediatric evaluations. METHODS: We targeted parents and other primary caregivers of Black children aged 8 years or younger awaiting a developmental or autism evaluation at an academic tertiary care hospital. Using a single-arm design, we recruited participants directly from the appointment waitlist and used flyers in local pediatric and subspecialty clinics. Eligible participants received a version of PTA adapted for Black children in two 6-week modules delivered synchronously online. In addition to initial baseline demographic data, we collected 4 standardized measures of parent stress and depression, family outcomes (e.g., advocacy), and child behavior at preintervention, midintervention, and postintervention. We calculated effect sizes and used linear mixed models to examine changes over time. RESULTS: Fifteen participants completed PTA, the majority of whom were Black mothers with annual household incomes <$50,000. All children were Black and mostly boys, with an average age of 4.6 years. Parent depression, the family outcome total score, and 3 family outcomes (understanding child's strengths, needs, and abilities; knowing rights and advocating for child; and helping child develop and learn) significantly improved pre-post intervention, with medium to large effect sizes. Furthermore, the family outcome total score and "knowing rights and advocating for child" outcome significantly increased by midintervention ( d = 0.62-0.80). CONCLUSION: Peer-delivered interventions can result in positive outcomes for families awaiting diagnostic evaluations. Further research is needed to confirm findings.

Qualitative inquiry from multiple perspectives of barriers and facilitators of oral health care for adults with disabilities.

AIMS: Adults with special health care needs (ASHCN) face significant disparities in access to oral health care and subsequent health outcomes, resulting from several etiologies. This study investigated perspectives of patients, caregivers, and providers to better understand care barriers and facilitators for ASHCN. METHODS: We conducted 26 semi-structured interviews with a purposive sample from an academic clinic specializing in oral health care for ASHCN with disabilities [patients (N = 4), caregivers (N = 8), and providers (N = 14)], and thematically analyzed transcripts for care barriers and facilitators. RESULTS: Three overarching themes that encompassed overlapping barriers and facilitators of oral health care for ASHCN emerged: relational aspects, provider training/experience, and infrastructure aspects. Themes include intersecting perceptions of factors that hinder or help oral health care and management of ASHCN. CONCLUSIONS: Building relationships with patients, inherent empathetic provider characteristics, and accommodating clinical infrastructure are imperative to facilitate oral health care for ASHCN. The primary themes revealed in this study are facilitators to care when they are present, and barriers to care when they are absent. No individual theme stands alone as a single contributor to quality care, and the provision of care for ASHCN relies on coordination of providers, patients, caregivers, and the overarching infrastructure.

A model of internalized stigma in parents of individuals with disabilities.

Background: Stigma has negative impacts on both individuals with disabilities and their caregivers, including poor mental health and social isolation. In the present study, we aimed to test a model of stigma internalization among parents of individuals with disabilities, as this process in not yet completely understood. Aim: Specifically, we explored effects of experienced stigma and neuroticism on affiliate stigma and examined whether perceived stigma and self-blame are mediators in a stigma internalization model. Methods: We recruited 82 parents of individuals with disabilities in Serbia over the course of six months. Parents were asked about perceived stigma, experienced stigma, affiliate stigma, self-blame, and they completed an assessment of personality traits. Results: Both experienced stigma and neuroticism were positively correlated with affiliate stigma. In addition, perceived stigma was a mediator between these variables: parents who experienced stigma more and had higher neuroticism scores reported higher degrees of perceived stigma, which in turn positively affected affiliate stigma. Self-blame was not a significant mediator in the tested model. Conclusion: We conclude stigma internalization among parents of individuals with disabilities is a complex process, involving experienced stigma, neuroticism, and perceived stigma. Interventions should include multiple paths to adequately support parents to combat stigma.

'I am so fearful for him': a mixed-methods exploration of stress among caregivers of Black children with autism.

Parenting stress is correlated with negative child and parent outcomes. Accurate parenting stress assessments are critical to inform appropriate service delivery. This study used mixed methods to identify stressors influencing parents of Black children with autism. Twenty-two parents of Black children with autism participated in individual interviews; 19 of these parents also completed the Parenting Stress Index (4th edition). While we found some consistency between our qualitative and quantitative findings, the Parenting Stress Index did not capture key stressors parents described in interviews, including cultural factors (e.g., perception of provider pushback due to race), challenges related to single parenting, and neighborhood violence. We detail recommendations for family-centered and culturally relevant efforts to assess and address parenting stress in this population.

Diagnostic Process and Barriers Among Chinese-American and Korean-American Parents of Children with Autism.

OBJECTIVE: We sought to understand the experiences of Chinese-American and Korean-American parents of children with autism, including their initial concerns regarding their child's development, reported health professionals' responses to these concerns, diagnostic barriers, and factors associated with early autism diagnosis. METHOD: We designed a survey with support from an expert advisory group and Asian-American parents of children with autism. We measured 3 time points of diagnostic history, areas of parents' concerns, professionals' responses to their concerns, 15 types of diagnostic barriers, and professionals' helpfulness. We used descriptive and independent t tests to analyze data from 28 parents of children with autism. RESULTS: Most of the parents (86%) had early concerns about their children's developmental delays and expressed their concerns to health professionals. However, approximately 60% of the parents reported that the professionals did not conduct developmental screenings or make referrals to specialists. The most common diagnostic barrier was the stress of the diagnostic process, followed by navigating health care systems. Parents who required interpreters noted poor quality and unavailability. Early child developmental concerns were associated with early autism diagnoses. CONCLUSION: Although many Chinese-American and Korean-American parents had early concerns regarding their child's development and shared their concerns with health care professionals, parents encountered many barriers, including the stress of the diagnostic process. Chinese-American and Korean-American parents with limited English proficiency required additional support. Health care professionals' active listening and responses to parents' concerns can promote early diagnosis.

The creator did not give me more than I can handle: Exploring coping in parents of Black autistic children.

LAY ABSTRACT: Parents of Black autistic children use several strategies to cope with daily stressors. These strategies include seeking social support, self-care, and optimism. We asked parents about their experiences receiving treatment services for their autistic child and how they reduce parenting stress. Twenty-two parents completed a coping survey and participated in individual interviews. Few studies have explored the experiences of Black families raising autistic children, and it's important for healthcare and other systems of care to understand the role culture, race, and ethnicity play in the use of coping strategies. In our study, the majority of parents relied on social support to relieve stress and identified partners, family, and community members, as their most useful sources of support. Connecting with other parents of autistic children, through support groups and social media, also helped parents relieve stress. Parents discussed using self-care activities (e.g. church, exercising, listening to music) to cope with stressors. Several parents described how prayer and meditation helped them reframe stressful situations and gain more patience and appreciation for "what's important." The findings of this work demonstrate the need for professionals to have ongoing and deeper conversations about the ways in which parents deal with stressors. In particular, clinicians should leverage the strengths of Black families and promote strategies that are culturally informed and engaged.

Parental experiences raising children with autism spectrum disorder in Eastern Europe: a scoping review.

Parents of children with autism spectrum disorder (ASD) are often at greater risk of experiencing stress and lower quality of life, in comparison to parents of typically developing (TD) children and other developmental disabilities. Despite vast literature on parental experiences in Western countries, little is known about this topic in Eastern Europe. Thus, we aimed to map studies that addressed parental experiences of children with ASD in Eastern Europe using the Double ABCX theoretical framework. The Double ABCX Model of family adaptation describes how families responds to stressors over time, based on the intercorrelation of available resources, coping mechanisms and appraisal of stressors. Following a scoping review methodological framework, we conducted a comprehensive search of three databases. We ultimately included 15 peer-reviewed studies in the review. Within each study, we examined Double ABCX Model factors. The studies were conducted in nine Eastern European countries and included parents of children and adults with ASD. Consistent with studies conducted in Western countries, parents of children with ASD expressed more personal and family challenges and greater maladaptation compared to parents of TD children. Moreover, families reported lower satisfaction with quality of life and more health problems. The small number of included papers from nine countries suggests that parental experiences of children with ASD in Eastern Europe are overlooked in the literature. Future research should explore findings from this review that differed from the Western literature, including contributing factors to parental adaption in families in Eastern Europe.

Psychometric evaluation of the medication adherence report scale in caregivers of low-income, urban, African American children with poorly controlled asthma.

OBJECTIVE: Accurately assessing asthma medication usage among low-income, urban, African American children is essential to reduce asthma health disparities. The purpose of this study was to examine the factor structure of the five-item Medication Adherence Report Scale (MARS), in a sample of caregivers of low-income, urban, African American youth with poorly controlled asthma. METHOD: Using baseline data from a randomized clinical trial evaluating the efficacy of an environmental control educational intervention, confirmatory factor analysis (CFA) was conducted to ascertain the MARS factor structure. Construct validity was assessed using a regression model inclusive of caregiver-reported medication adherence, Asthma Medication Ratio (AMR), asthma control, and caregiver perception of asthma control as predictors of the MARS. RESULTS: Caregivers were female (97%) and 27.4% had an annual income under $10,000. The mean MARS score was 21.88 ± 3.33 out of a possible range of 5-25, representing high adherence. Confirmatory factor analysis indicated that a five-item one-factor model marginally fit the data based on the fit indices: χ2 (5) = 31.71, p < 0.001; RMSEA ≤ 0.161; CFI = 0.986; TLI = 0.971; and WRMR = 0.979. The MARS was associated with another caregiver-reported measure of medication adherence but not associated with AMR, asthma control, or caregiver perception of asthma control. CONCLUSIONS: The MARS demonstrated marginal fit in CFA and may not be clinically indicated in light of the lack of associations with objective measures of asthma medication adherence and asthma control.

Brief Report: Impact of the COVID-19 Pandemic on Asian American Families with Children with Developmental Disabilities.

Discrimination against Asians and Asian Americans increased during the COVID-19 pandemic. Yet, even prior to the pandemic, little research explored the experiences of Asian American families of children with autism and other developmental disabilities. This brief report summarizes the results of a survey conducted between May and July 2020, in the immediate aftermath of state and local lockdowns due to the pandemic. Twenty-five Asian American caregivers of children with autism and other developmental disabilities completed the survey and reported on the pandemic's impact on their household. Most of the caregivers were mothers, immigrants, Chinese, raising children with autism, and highly educated. Participants' primary concerns were the disruption of their children's educational and therapeutic services. We discuss research limitations and implications.

Black Caregivers' Perspectives on Racism in ASD Services: Toward Culturally Responsive ABA Practice.

Significant racial and ethnic disparities in health care and service access exist. In the present article, we reviewed qualitative studies investigating the racism-related experiences of Black caregivers of children with autism spectrum disorder (ASD) in the U.S. health care system. Specifically, we examined institutional racism (i.e., systemic racism) and individual racism directed toward Black families when they seek diagnoses and services for their children with ASD. Additionally, we summarized culturally responsive and context-specific practice guidelines to work collaboratively with Black caregivers of children with ASD for applied behavior analysis practitioners.

The Effects of Caregiver Social Support and Depressive Symptoms on Child Medication Adherence and Asthma Control.

The purpose of this study was to examine relationships among caregiver social support, caregiver depressive symptoms, medication adherence, and asthma control in a sample of low-income, urban, Black children aged 3-12 years with uncontrolled asthma and their caregivers. Using longitudinal data from a randomized controlled trial (RCT) assessing the efficacy of an environmental control educational intervention, we used generalized estimating equations and ordered logistic regression models to evaluate the relationship between caregiver social support (Medical Outcomes Study Social Support Survey), depressive symptoms (Center for Epidemiologic Studies Depression scale), and two child asthma outcomes: (a) medication adherence (Asthma Medication Ratio) and (b) asthma control. At baseline, 45.7% of the 208 children had very poorly controlled asthma. Nearly a third of caregivers (97% female) had clinically significant depressive symptoms at each data collection point. Social support was not associated with either asthma outcome nor did it moderate the relationship between depressive symptoms and child asthma outcomes. Higher caregiver depressive symptoms predicted decreased medication adherence (b=-0.003, SE 0.002). Moderate asthma at baseline (OR: 0.305, SE: 0.251), severe asthma at baseline (OR: 0.142, SE: 0.299), household income < $20,000 per year (OR: 0.505, SE: 0.333), and fall season (OR: 0.643, SE: 0.215) were associated with poorer asthma control. Attending to the social context of low-income, urban, Black children with asthma is critical to reduce asthma morbidity. Maternal depressive symptoms are modifiable and should be targeted in interventions to improve child asthma outcomes in this vulnerable population. The RCT was registered with ClinicalTrials.gov (NCT01981564) in October 2013.

Can You Hear Me Now? Effects of Patient-Centered Communication With Young Adults Aged 26 to 39.

Patient-centered communication (PCC) is critical to the delivery of quality health care services. Although numerous health outcomes have been connected to patient-provider communication, there is limited research that has explored the processes and pathways between communication and health. Research among young adults (ages 26-39 years) is even more scarce, despite findings that health communication does vary with age. This cross-sectional study used data from the 2014 Health Interview National Trends Survey to explore the relationship between PCC, patient trust, patient satisfaction, social support, self-care skills, and emotional well-being among young adults aged 26 to 39 years. Our results showed that income, history of depression diagnosis, PCC, patient trust, social support, and patient self-efficacy (self-care skills) were all significantly related to emotional well-being. These findings suggest the need to explore the means through which communication can impact emotional well-being, specifically among young adults who are in poor health or have a history of depression. Future research should also include longitudinal studies, in order to determine causality and directionality among constructs.

Racial Disparities in a Sample of Inpatient Youth with ASD.

Although more than one in 10 youth with Autism Spectrum Disorder (ASD) is admitted to a psychiatric facility before they reach adulthood, the inpatient population is underrepresented in research. Furthermore, Black youth are more likely to be psychiatrically hospitalized, compared to their White counterparts. Yet, prior research has been inconsistent in potential racial differences in ASD symptoms and severity. This study examined differences in the symptom presentation of psychiatrically hospitalized Black and White youth with ASD. Researchers collected data as part of a larger study of youth admitted to one of six US specialized inpatient psychiatric units between 2013 and 2017. We used bivariate and multivariate models to analyze the data. The study included 654 youth diagnosed with ASD, with an average age of 13 years. While bivariate analyses found that Black youth had lower written language and daily living skills and more impaired social affect and inappropriate speech, multivariate regression models suggested that overall ability level and age may be driving these differences. Specifically, the only variables that significantly predicted adaptive functioning (written language, daily living) and behavioral profiles (social affect, inappropriate speech) were verbal ability, IQ, and age. Race was not a significant predictor in any of the models. Cultural diversity and competency are vital to the identification and treatment of ASD clinical care. Thus, understanding the role race may play in early detection and accurate diagnosis is important to improving ASD identification, diagnosis, and treatment. Autism Res 2020, 13: 532-538. © 2020 International Society for Autism Research, Wiley Periodicals, Inc. LAY SUMMARY: This study examined differences in autism symptoms between Black and White youth in psychiatric hospitals. We found that while it initially appeared that Black and White youth differed in written language and daily living skills, these racial differences were not significant once we accounted for differences in IQ, age, and verbal ability. Our findings suggest that providers should pay greater attention to other potential reasons for racial disparities in autism services.

Cultural Experiences of Arab American Caregivers Raising Children with Autism Spectrum Disorder.

Research on families' experiences raising children with Autism Spectrum Disorder (ASD) is limited in minority ethnic and cultural groups, such as the Arab American community. Twenty Arab American caregivers raising children with ASD completed online questionnaires regarding their experiences with stigma and acculturation. Nine participants completed follow-up phone interviews. Perceived stigma fell in the low to moderate range. Acculturation related to social interactions indicated slightly greater assimilation compared to separation, and slightly greater integration over marginalization. During interviews, participants discussed the impact of disability stigma, distancing from their communities, and parent gender roles. By better understanding Arab American families raising children with ASD professionals can work towards improving clinical services for these families.

The Influence of Race and Ethnicity on the Relationship between Family Resilience and Parenting Stress in Caregivers of Children with Autism.

We examined the relationship between family resilience and parenting stress among parents of children with autism spectrum disorder, with a specific focus on race/ethnicity as a moderator. Multivariate models indicated that family resilience was associated with parenting stress. Race/ethnicity significantly moderated the relationship between family resilience and parenting stress. The effects of family resilience on parenting stress were significantly different among parents of African American, Hispanic, and white children. These effects were strongest for parents of African American children. Compared to white and Hispanic children, parents of African American children with low levels of family resilience had 60-82% higher probability of parenting stress; while those with high levels of family resilience had 15-18% lower probability for parenting stress.

Brief Report: Participation of Black and African-American Families in Autism Research.

Black and African-American families are underrepresented in research on autism spectrum disorder (ASD) and few studies have explored how to increase their involvement. To address this gap in the literature, this study explored the perspectives of 22 Black families raising children with ASD in order to identify facilitators and barriers to research participation; as well as suggestions to increase their involvement in ASD studies. Facilitators to research involvement included a desire to contribute to ASD research inclusive of Black families; to seek information and support for child and/or caregiver; and, to engage with culturally responsive research team members. Barriers to research involvement included stigma; denial, shame, and/or embarrassment; distrust of the research process; lack of time/interest; and research material inaccessibility or literacy issues.

Considerations in implementing evidence-based early autism spectrum disorder interventions in community settings.

Evidence-based practices (EBPs) in early intervention for autism spectrum disorder (ASD) have the potential to improve children's developmental trajectories and address family needs. However, the successful use of EBPs in community early intervention settings requires careful attention to the context in which services are delivered. Implementation science, and specifically the Exploration, Preparation, Implementation, and Sustainment (EPIS) Model, provides a framework to examine context across multiple levels and identify barriers and facilitators to community EBP use. This article identifies several considerations most relevant for early intervention in ASD at the outer and inner context levels, as well as bridging and innovation factors. Outer context considerations include the policies and funding streams surrounding service delivery, the role of advocacy in shaping the service landscape, the availability of appropriate specialists to provide services, and family cultural characteristics. Inner context factors include the individual characteristics of both the children receiving the service as well as the provider delivering the service, in addition to the leadership and organizational climate surrounding the use of a particular EBP. We also discuss considerations of the specific innovation (in this case, EBP early interventions) to be deployed, as well as bridging factors.