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.

Evaluation of an adapted virtual training for master trainers of the WHO Caregiver Skills Training Program during the COVID-19 pandemic.

LAY ABSTRACT: The COVID-19 pandemic interrupted in-person professional activities. We developed and evaluated a remote training approach for master trainers of the Caregiver Skills Training Program. Master trainers support community practitioners, who in turn deliver the Caregiver Skills Training Program to caregivers of children with developmental delays or disabilities. The Caregiver Skills Training Program teaches caregivers how to use strategies to enhance learning and interactions during everyday play and home activities and routines with their child. The aim of this study was to evaluate the remote training of master trainers on Caregiver Skills Training Program. Twelve out of the 19 practitioners who enrolled in the training completed the study. The training consisted of a 5-day in-person session completed prior to the pandemic, followed by supporting participants' ability to identify Caregiver Skills Training Program strategies through coding of video recordings over 7 weekly meetings and group discussions and ended with participants independently coding a set of 10 videos for Caregiver Skills Training Program strategies. We found all but one participant was able to reliably identify Caregiver Skills Training Program strategies from video recordings despite a lack of ability to practice the Caregiver Skills Training Program strategies with children due to the pandemic. Taken together, our findings illustrate the feasibility and value of remote training approaches in implementing interventions.

How Did Governments Address the Needs of People With Disabilities During the COVID-19 Pandemic? An Analysis of 14 Countries' Policies Based on the UN Convention on the Rights of Persons With Disabilities.

BACKGROUND: People with disabilities have experienced heightened social risks in the context of the pandemic, resulting in higher rates of infection and mortality. They have also borne elevated burdens associated with public health measures. The United Nations Convention on the Rights of Persons with Disabilities (UNCRPD) obliges its 184 state parties to eliminate discrimination and ensure equality and inclusion for persons with disabilities, including protection and safety in situations of emergency. It remains unclear to what extent national COVID-19 policies have aligned with these commitments under the UNCRPD. Our objective in this exploratory study was to assess alignment between the UNCRPD indicators and COVID-19 policies from 14 countries with the goal of informing policy development that is inclusive of persons with disabilities and responsive to rights under the UNCRPD. METHODS: We identified COVID-19 policy documents from 14 purposively selected countries. Country selection considered diversity based on geographic regions and national income levels, with restriction to those countries that had ratified the UNCRPD and had English or French as an official language. We used a computational text mining approach and developed a complex multilevel dictionary or categorization model based on the UNCRPD Bridging the Gap indicators proposed by the Office of the High Commissioner on Human Rights (OHCHR). This dictionary was used to assess the extent to which indicators across the entirety of the UNCRPD were represented in the selected policies. We analyzed frequency of associations with UNCRPD, as well as conducting 'key word in context' analyses to identify themes. RESULTS: We identified 764 COVID-19 national policy documents from the period of January 2020 to June 2021. When analyzed in relation to the Articles of the UNCRPD, the most frequently identified were Articles 11 (risk and humanitarian emergencies), 23 (home and family), 24 (education), and 19 (community living). Six countries produced 27 policies that were specifically focused on disability. Common themes within these documents included continuation of services, intersectionality and equity, and disability considerations in regulations and public health measures. CONCLUSION: Analyzing country policies in light of the UNCRPD offers important insights about how these policies do and do not align with states' commitments. As new policies are developed and existing ones revised, more comprehensive approaches to addressing the rights of persons with disabilities are urgently needed.

Progress and gaps in Quebec's autism policy: a comprehensive review and thematic analysis.

OBJECTIVE: Consistent with a national and global trend, prevalence estimates of autism have risen steadily in Quebec, causing concerns regarding quality and availability of diagnostic and intervention services as well as policies guiding service delivery and their efficacy. We conducted an analysis of Quebec's autism policies to determine recent advances, challenges and gaps in the planning and delivery of provincial autism services. METHODS: We identify autism policy priorities in Quebec through a comprehensive review and a thematic analysis of past and present policies, consider their compliance with national and international human rights and health frameworks and identify policy gaps. RESULTS: Autism policies articulated at a provincial level in Quebec are comprehensive, well grounded in international and national frameworks and considerate of existing barriers in the systems. Quebec policies reflect long-standing recognition of many barriers affecting service utilization and quality. Root cause of challenges currently confronting the policy environment in Quebec includes limitations in: specific measures to enhance a person-centred approach across the lifespan, evaluation of economic costs associated with autism, utilization of research evidence, and enactment of policies. CONCLUSION: Early intervention services, building capacity in existing resources through training programs, and integrating research through research translation initiatives can help the Québec government improve the quality and efficacy of services while reducing long-term costs to the systems and promoting quality of life for individuals with autism and their families.

BRIGHT Coaching: A Randomized Controlled Trial on the Effectiveness of a Developmental Coach System to Empower Families of Children With Emerging Developmental Delay.

Background: In preschool-aged children with, or at elevated risk for, developmental disabilities, challenges and needs arise from vulnerabilities linked to critical and newly emerging cognitive, speech, motor, behavioral, and social skills. For families, this can be a stressful period as they witness the gradual unfolding of their child's differences and await to receive care. Nationally and internationally, service delivery models during this critical period are not standardized nor are they nimble or sufficient enough, leading to long wait times, service gaps and duplications. Given these struggles, there is a need to examine whether "health coaching", a structured educational program that is deliverable by different and more accessible means, can be effective in empowering families, by delivering information, providing social supports, and decreasing the demands on the overwhelmed health and developmental services. The primary objective is to evaluate the feasibility and the effectiveness of a coaching intervention (in comparison to usual and locally available care), for parents of children with emerging developmental delays. Method/Design: A multi-centered pragmatic randomized controlled trial design will be used. Families will be recruited from a representative sample of those awaiting publicly-funded regional child health services for children with developmental delays in four Canadian provinces. The target sample size is 392 families with children aged 1.5 to 4.5 years at recruitment date. Families will be randomly assigned to receive either the BRIGHT Coaching intervention (coach supported, hardcopy and online self-managed educational resources: 14 sessions, 2 sessions every 4 weeks for 6-9 months) or usual care that is locally available. In addition to the feasibility and acceptability measures, outcomes related to family empowerment, parental satisfaction and efficacy with caregiver competency will be evaluated at baseline, post-treatment (8 months), and follow-up (12 months). Discussion: This manuscript presents the background information, design, description of the interventions and of the protocol for the randomized controlled trial on the effectiveness of BRIGHT Coaching intervention for families of children with emerging developmental delays. Trial Registration: ClinicalTrials.gov, U.S. National Library of Medicine, National Institutes of Health #NCT03880383, 03/15/2019. Retrospectively registered.

Infant neural sensitivity to dynamic eye gaze relates to quality of parent-infant interaction at 7-months in infants at risk for autism.

Links between brain function measures and quality of parent-child interactions within the early developmental period have been investigated in typical and atypical development. We examined such links in a group of 104 infants with and without a family history for autism in the first year of life. Our findings suggest robust associations between event related potential responses to eye gaze and observed parent-infant interaction measures. In both groups, infants with more positive affect exhibit stronger differentiation to gaze stimuli. This association was observed with the earlier P100 waveform component in the control group but with the later P400 component in infants at-risk. These exploratory findings are critical in paving the way for a better understanding of how infant laboratory measures may relate to overt behavior and how both can be combined in the context of predicting risk or clinical diagnosis in toddlerhood.

Community engagement and knowledge translation: progress and challenge in autism research.

The last decade has seen significant growth in scientific understanding and public awareness of autism. There is still a long road ahead before this awareness can be matched with parallel improvements in evidence-based practice. The process of translating evidence into community care has been hampered by the seeming disconnect between the mainstream scientific research agenda and the immediate priorities of many communities. The need for community engagement in the process of translating knowledge into impact has been recognized. However, there remains little consensus or empirical data regarding the process of such engagement and how to measure its impact. We shed light on a number of engagement models and tools, previously advocated in health research, as they apply to autism research. Furthermore, we illustrate the utility of such tools in supporting identification of knowledge gaps and priorities, using two community-based case studies. The case studies illustrate that information generated from research is indeed relevant and critical for knowledge users in the community. Simple and systematic methods can support the translation and uptake of knowledge in diverse communities, therefore enhancing engagement with research and bridging research findings with immediate community needs.