Urban and rural differences in needs, service use and satisfaction among caregivers of autistic children in Morocco.

LAY ABSTRACT: It is very important to understand the needs of caregivers to be able to empower caregivers and to develop or improve services around the world. Therefore, research in different regions is needed to understand differences in caregivers needs between countries, but also between areas within countries. This study investigated differences in needs and service use between caregivers of autistic children in Morocco, living in urban and rural areas. A total of 131 Moroccan caregivers of autistic children took part in the study and responded to an interview survey. The results showed both similarities and differences between urban and rural living caregivers' challenges and needs. Autistic children from urban communities were much more likely to receive intervention and attend school than children from rural communities, even though age and verbal skills of the two groups of children were comparable. Caregivers expressed similar needs for improved care and education, but different challenges in caring. Limited autonomy skills in children were more challenging to rural caregivers, while limited social-communicational skills were more challenging to urban caregivers. These differences may inform healthcare policy-makers and program developers. Adaptive interventions are important to respond to regional needs, resources, and practices. In addition, the results showed the importance of addressing challenges as experienced by caregivers such as costs related to care, barriers in access to information, or stigma. Addressing these issues may help reduce both global and within-country differences in autism care.

Development and Psychometric Evaluation of the Open-Source Challenging Behavior Scale (OS-CBS).

At present, there are no brief, freely-available, informant-report measures that evaluate key challenging behaviors relevant to youth with autism spectrum disorder (ASD) or other developmental disabilities (DD). This paper describes the development, refinement, and initial psychometric evaluation of a new 18-item measure, the Open-Source Challenging Behavior Scale (OS-CBS). In a large sample (n = 2004, 169 with ASD, ages 2-17), results of psychometric analyses indicated a clear factor structure (property destruction, aggression, elopement, conduct problems, and self-injury and a general factor with high loadings from all items) based on exploratory structural equation modeling, good scale reliability (α = .66-.83 for subscales, α = .91 total scale), measurement invariance across demographics, and good construct validity. The OS-CBS is a psychometrically-sound instrument for screening and monitoring intervention progress.

Socio-demographic disparities in receipt of clinical health care services during the COVID-19 pandemic for Canadian children with disability.

BACKGROUND: Little is known about the experience of receiving in-person and virtual clinical health care services during the COVID-19 pandemic for Canadian children with developmental disabilities and delays facing multiple layers of vulnerability (e.g., low income, low educational attainment families). We examined the relationship between socio-demographic factors and the receipt of these services (physical and mental health services) during COVID-19 for Canadian children with these conditions. METHODS: Data collected in Canada for the Global Report on Developmental Delays, Disorders and Disabilities were used. The survey: (1) was developed and disseminated in collaboration with caregivers of children with disabilities, (2) included topics such as response to the pandemic and receipt of services and supports, and (3) documented the experiences of a non-random convenience sample of caregivers of children (any age) with these conditions during and prior to the pandemic. We used four logistic regression models to assess the association between socio-demographic factors and receipt of services. RESULTS: Being a single parent, having low educational attainment (high school or less), having low income (making less than $40,000 per year), working less than full time (working part-time, working reduced hours due to COVID, retired, stay home parent or student), as well as male gender and older age of the child with disability were factors associated with decreased likelihood of receiving services. CONCLUSION: Our findings point to the need for tailoring services for families of children with disabilities, particularly low socioeconomic status families, to ensure continuity of care during public health emergencies.

Associations between executive functioning, challenging behavior, and quality of life in children and adolescents with and without neurodevelopmental conditions.

The present study sought to clarify the impact of executive and social functioning on challenging behavior and the downstream influence of challenging behavior on quality of life and functioning in a large transdiagnostic sample. Understanding these relationships is crucial for developing and designing tailored intervention strategies. In a cross-sectional study, parent informants of 2,004 children completed measures of executive and social functioning, challenging behavior, child and family quality of life, and reported on functional impacts of challenging behavior. Using structural (path) modeling, analyses evaluated the associations between executive and social functioning, including emotion regulation and risk avoidance, with overall and specific types of challenging behavior. Structural models also examined the influence of challenging behavior on child and family quality of life, including measures of the immediate and extended environment, and functional impacts on the parent/child as well as interactions with the medical/legal systems. Finally, mediational models explored the direct and indirect effects of executive and social functioning on quality of life and impact measures via challenging behavior. Results indicated that executive functioning accounts for substantial variance (R 2 = 0.47) in challenging behavior. In turn, challenging behavior accounts for substantial variance in child and family quality of life (R 2 = 0.36) and parent/child impacts (R 2 = 0.31). Exploratory mediational models identified direct effects from executive and social functioning measures on quality of life and functional impacts and indirect effects for executive functioning via challenging behavior. These findings support the development of new intervention strategies and suggest the need to measure executive functioning when assessing and tailoring the treatment of challenging behavior in clinical practice.

Factors associated with resilience among children and youths with disability during the COVID-19 pandemic.

There is evidence of negative impact of social distancing and confinement measures to manage the COVID-19 pandemic on children, including increased anxiety and depression and behaviour difficulties. Paradoxically, positive impacts like increased support and more self-care activities have also been documented. Little is known about the impact of the COVID-19 pandemic on the children with disability and the potential role of familial, environmental, and biological factors on mitigating this impact. The aims of the study were 1) identifying profiles of functioning across multiple domains during the COVID-19 pandemic and 2) examining the extent to which parenting self-efficacy, support in accessing schooling, and type of diagnosis predict the likelihood of resilience among children with disability, after controlling for household income and single-parent status. An online survey developed from COVID-19 guidance recommendations, was available from June 11- July 21, 2020, and resulted in a convenience sample of caregivers across Canada (n = 883) of children with disability (mean age of 9.4 years old, SDage = 5.7, 58% male). We conducted latent class analysis to examine the number of latent profiles on caregiver-reported changes of 12 functioning domains, as either 'worsening', 'no change', or 'improving'. Most participants belonged to 'stable' or 'worsening' profiles. However, we identified a small subgroup with improvements in child functioning, a pattern indicative of a 'resilient' profile. Using a multinomial logistic regression, we found that diagnosis type, parenting self-efficacy and support in accessing schooling were associated with membership in the Resilient or Stable profiles compared to the Worsening profile, after controlling for single-parent status and income. Taken together, our findings identified variability in responses to adversity that is dependent on the child's diagnosis type, parenting self-efficacy, and support in accessing schooling. By identifying potentially modifiable predictors of resilience, namely parenting self-efficacy and support in accessing schooling, we signal the potential for tailored supports for different diagnoses, through interventions that enhance caregiver empowerment, access to schooling, access to health and social services, and/or mitigate disparities resulting from social disadvantage.

Food insecurity in households of children with ASD in COVID-19 pandemic: A comparative analysis with the Household Pulse Survey data using stabilized inverse probability treatment weights.

BACKGROUND: Before the COVID-19 pandemic, households of children on the autism spectrum were more likely to be food insecure than households of children without disabilities. With the unprecedented social, public health, and economic disruption caused by the pandemic, food insecurity has likely increased among families of children on the autism spectrum. OBJECTIVE: This analysis aims to compare the prevalence of food insecurity between the Autism Speaks' Food Insecurity Survey (ASFIS) administered during the Fall of 2020 and a nationally representative sample from the Household Pulse Survey (HPS) data collected during a similar timeframe. METHODS: A propensity score analysis was utilized to create stabilized inverse probability treatment weights for adjusting background differences between the two groups. A logistic regression model was computed to estimate the odds of food insecurity in the ASFIS participants compared with those in the HPS data. RESULTS: After adjusting for background differences, households of children on the autism spectrum in the ASFIS were about four times more likely to be food insecure than households in the general population contained in the HPS data (OR = 3.7; 95% CI: 3.1-4.4). CONCLUSIONS: The breakdown of social and economic supports during the COVID-19 pandemic contributed to a significantly higher likelihood of food insecurity among families of children on the autism spectrum.

Brief report: Validity and reliability of the Nigerian Autism Screening Questionnaire.

LAY ABSTRACT: Early intervention for individuals with autism spectrum disorder (ASD) is dependent on reliable methods for early detection. Screening for ASD symptoms is an important strategy in low- and middle-income countries that often lack adequate service infrastructure. This study aims to conduct preliminary evaluation of the psychometric properties of a tool developed and deployed in Nigeria called the Nigerian Autism Screening Questionnaire (NASQ). Results demonstrated that NASQ, when used as a community-based survey, has a clear factor structure with consistent measurement across age and sex, and that scores from below average to well above average are measured reliably. Future research is needed to examine the performance of this tool against confirmatory ASD diagnosis in screening and diagnostic contexts to further understand the utility and applicability of this tool in the resource-limited Nigerian setting.

Brief Report: Impact of COVID-19 in Individuals with Autism Spectrum Disorders: Analysis of a National Private Claims Insurance Database.

The COVID-19 pandemic continues to have a detrimental impact on individuals with disabilities. Data from FAIR Health's FH® NPIC (National Private Insurance Claims) database, one of the nation's largest databases of private insurance claim records, were analyzed to understand the experiences of individuals with ASD in the COVID-19 pandemic. Multivariate logistic regression models revealed that individuals with ASD + ID were nine times more likely to be hospitalized following COVID-19 infection (OR = 9.3; 95% CI: 6.9-12.5) and were nearly six times more likely to have an elevated length of hospital stay (OR = 5.9; 95% CI: 3.5-10.1) compared to those without ASD + ID. These findings point to the need for prioritizing access to vaccines to prevent COVID-19 infection and morbidities. This is the first study to illustrate a higher likelihood of hospitalization and elevated length of hospital stay from COVID-19 in individuals with ASD and other comorbidities.

Diagnostic paths and service needs of children with autism spectrum disorder and with other neurodevelopmental disorders in Bulgaria.

Background: Currently, there are no official statistics about the number of children with developmental disorders in Bulgaria. This is the first systematic investigation of the needs, access to services, and priorities of families of children with developmental disorders in the country. Aims: The study aims to: (1) characterize the needs of children with developmental disorders in Bulgaria; (2) to compare the needs and access to services of children with Autism Spectrum Disorders (ASD) and other neurodevelopmental disorders (oNDD); (3) and to examine the daily burden of their caregivers and how it varies based on their demographic characteristics, such as income and education. Methods: We used an online family needs assessment survey to collect data from caregivers of children with developmental disorders in Bulgaria between April and July 2020. 195 parents of children with ASD and 73 parents of children with oNDD completed the questionnaire. Results: Children with ASD waited longer than children with oNDD to receive a diagnosis. Caregivers in the ASD group also expressed first concerns about their child's development when their children were older and for different reasons than caregivers in the oNDD group. There were no significant differences between groups in service encounters, including access to and delay of medical, counseling, and educational services, with approximately 50% of all caregivers experiencing some delay and/or difficulties in access to services. There were no associations between access to services and caregiver education and family income, with the exception of higher education being linked to receiving a diagnosis earlier for the oNDD group. Discussion: This study has three main findings: (1) children with ASD and children with oNDD in Bulgaria have different needs and paths to diagnosis; (2) nevertheless, children in both groups experience similar challenges in accessing medical, counseling, and educational services, regardless of their demographic characteristics; and (3) parents' priorities focus on education, counseling, and medical support, protecting children's basic rights, and raising awareness. A comparison of our findings to past research in the region shows a relative improvement in diagnostic services with families not having to travel outside their city to receive a diagnosis. Based on our findings, we provide specific recommendations for changes in services and policy.

Food insecurity in the households of children with autism spectrum disorders and intellectual disabilities in the United States: Analysis of the National Survey of Children's Health Data 2016-2018.

LAY ABSTRACT: Families of children with autism spectrum disorder are more likely to experience financial strain and resulting food insecurity due to additional cost of care, disparate access to needed services, and loss of income resulting from parental job loss. Utilizing nationally representative data, this analysis indicates that the families of children with autism spectrum disorder and co-occurring intellectual disabilities are twice as likely to experience food insecurity than families of children without disabilities after adjusting for various factors. Several factors, ranging from state-level policies such as Medicaid expansion to individual-level factors such as higher utilization of emergency room services, were associated with the higher prevalence of food insecurity in families of children with autism spectrum disorder and co-occurring intellectual disabilities. Implications of these findings on programs and policies supporting families in the COVID-19 pandemic are discussed.

Health Disparities among Children with Autism Spectrum Disorders: Analysis of the National Survey of Children's Health 2016.

Utilizing the 2016 National Survey of Children's Health, this study illustrates that children with ASD have nearly 4 times higher odds of unmet health care needs compared to children without disabilities, whereas children with other disabilities had nearly 2 times higher odds of unmet health care needs compared to children without disabilities. Applying Andersen's Behavioral Model of health care utilization, this study estimates that enabling factors (e.g., access to health insurance, quality of health insurance, access to family-centered care, family-level stress, exposure to adverse childhood experiences, and parental employment) improved prediction of regression model for unmet health care needs by 150%. Policy and program implications are discussed and a new framework for responding to observed disparities is discussed.

Predicting improvement of transitioning young people in the partnerships for youth transition initiative: findings from a multisite demonstration.

Prior research has indicated that young people with serious mental health conditions show poorer progress and greater challenges in the transition to adulthood, as reflected by lower rates of employment and postsecondary education, higher rates of criminal justice involvement, and greater interference in daily activities from mental health and substance use disorders. Little knowledge exists, however, regarding improvement on these indicators among young people enrolled in community-based transition support programs and individual characteristics that might moderate this improvement. This study describes rates of improvement on indicators of transition progress and challenges among young people enrolled in a multisite demonstration of transition support programs. Young people in the study showed increased rates of progress and decreased rates of challenges over four quarters of enrollment. Moderation of these changes by individual characteristics including demographic, historical, and diagnostic variables suggested ways of improving transition support programs and avenues for future research.

Rural Indian tribal communities: an emerging high-risk group for HIV/AIDS.

BACKGROUND: Rural Indian tribes are anthropologically distinct with unique cultures, traditions and practices. Over the years, displacement and rapid acculturation of this population has led to dramatic changes in their socio-cultural and value systems. Due to a poor health infrastructure, high levels of poverty and ignorance, these communities are highly vulnerable to various health problems, especially, communicable diseases including HIV/AIDS. Our study sought to assess knowledge, attitudes and practices regarding sexuality, and the risk factors associated with the spread of HIV/AIDS and STDs among these communities. METHODS: A nested cross sectional study was undertaken as part of the on going Reproductive and Child Health Survey. A total of 5,690 participants age 18-44 were recruited for this study. Data were obtained through home interviews, and focused on socio-demographics, knowledge, attitudes and behaviors regarding sexuality, HIV/AIDS and other STDs. RESULTS: The study revealed that only 22% of adults had even heard of AIDS, and 18 % knew how it is transmitted. In addition, only 5% knew that STDs and AIDS were related to each other. AIDS awareness among women was lower compared to men (14% vs.30 %). Regarding sexual practices, 35% of the respondents reported having had extramarital sexual encounters, with more males than females reporting extramarital affairs. CONCLUSION: Lack of awareness, permissiveness of tribal societies for premarital or extra-marital sexual relationships, and sexual mixing patterns predispose these communities to HIV/AIDS and STD infections. There is a dire need for targeted interventions in order to curtail the increasing threat of HIV and other STDs among these vulnerable populations.