Experiences of racism and racial disparities in health care among children and youth with autism and their caregivers: a systematic review.

PURPOSE: Although the health benefits of early diagnosis and therapeutic approaches for children and youth with autism spectrum disorder (ASD), racial disparities persist. This systematic review explored the experiences of racism and racial disparities in health care among children and youth with ASD and their caregivers. METHODS: We conducted a systematic review, drawing on six international databases. Two reviewers screened titles, abstracts, and full texts. Thirty-seven studies met our inclusion criteria and we applied a narrative synthesis to develop themes. RESULTS: Four themes were identified: (1) experiences and aspects of racism and racial disparities (i.e., language and cultural barriers, poor quality health care interactions, stereotypes and discrimination, family and community stigma, and indirect barriers); (2) racial disparities in health care (i.e., screening and referral, diagnosis, health care services, and care coordination and medication); (3) facilitators to accessing health care services; and (4) recommendations from caregivers. CONCLUSIONS: This review highlights the extensive racial disparities experienced by children with autism. More research is needed to explore youth's perspectives on racism in addition to exploring potential interventions to address racial disparities and improve health equity for youth with ASD.

Racial minoritized youth with autism experience many barriers in accessing health care and there is an urgent need to address the systemic racism within our health care systems.Health care leaders and decision-makers should advocate for policy and systems change to enhance equitable access to health services for all youth with disabilities, especially those who belong to minoritized groups.Health care providers should consider engaging in relevant training to provide culturally safe and appropriate services for racially diverse clients with autism.Health care providers and decision-makers should work together to remove barriers to accessing health care for racial minoritized youth with autism.

Emergency and disaster preparedness among children and youth with disabilities and chronic conditions, their caregivers and service providers: a scoping review.

PURPOSE: People with disabilities, especially children and youth, are often not considered in emergency and disaster preparedness planning, which leaves them vulnerable and at a higher risk of the negative effects of natural and human caused disasters. The purpose of this study was to understand the extent of emergency and disaster preparedness and factors influencing preparedness among children and youth with disabilities and chronic conditions, their caregivers and service providers. METHODS: Our scoping review involved searching six international databases that identified 1146 studies of which 27 met our inclusion criteria. RESULTS: The studies in this review involved 2613 participants (i.e., children, parents, educators and clinicians) across nine countries over a 20-year period. Our results highlighted the following trends: (1) the extent of emergency preparedness; (2) factors affecting emergency preparedness; and (3) interventions to enhance preparedness. CONCLUSIONS: Our findings underscore the critical need for more attention to emergency preparedness for children and youth with disabilities, their families and service providers and their inclusion in planning.

Support is needed for emergency preparedness for children with disabilities at an individual, family and community level.Clinicians should assist children with disabilities and their families to develop a disaster and emergency preparedness plan that includes their medical needs, basic supplies and connections to relevant resources and supports.Clinicians and educators should advocate for the inclusion of children and youth with disabilities in emergency and disaster preparedness.

Types and factors affecting and impact of ableism among Asian children and youth with disabilities and their caregivers: a systematic review of quantitative studies.

PURPOSE: Asian children and youth with disabilities often experience multiple barriers and discrimination in education, healthcare, and social settings, which influence their well-being, especially the transition to adulthood. This review aims to explore the types, factors affecting and impact of ableism on Asian children and youth with disabilities and their caregivers. METHODS: We conducted a systematic review and a narrative synthesis whereby we searched the literature from six international databases, including Healthstar, Ovid Medline, Embase, PsycInfo, Scopus, and Web of Science. RESULTS: Twenty-nine studies were included in the review, and three themes were identified that related to ableism: (1) types and rates of ableism (i.e., stigma, bullying and victimization, and discrimination and inequalities); (2) factors affecting ableism (i.e. sociodemographic factors, familial factors, and societal factors); and (3) impacts of ableism (i.e. mental health, family impacts, and societal impacts). CONCLUSIONS: Our review highlights that ableism has various types and can be influenced by multiple factors, influencing social and health outcomes of Asian families with children and youth with disabilities. This review also emphasizes the importance of increasing the public's awareness regarding disabilities to reduce ableism among Asian families with children with disabilities.

Asian children and youth with disabilities often experience bullying and victimization, therefore it is necessary to develop educational materials to raise awareness of disabilities.Healthcare providers should consider developing more educational programs for caregivers to reduce self-stigma and affiliate stigma and promote mental health.  Healthcare service providers should consider creating and implementing more inclusive programs to reduce health disparities and the influence of socio-demographic factors.

More than just double discrimination: a scoping review of the experiences and impact of ableism and racism in employment.

PURPOSE: Research has shed light on the employment barriers faced by individuals with disabilities, and by racialized people. The challenges faced by people belonging to both marginalized groups are less well-understood. The purpose of this scoping review was to examine existing research on labour market and workplace experiences of racialized people with disabilities, and to identify how ableism and racism intersect to shape employment experiences and outcomes. METHODS: Seven international databases were searched, covering the period from 2000 to April 2022. Four reviewers independently conducted the screening, and data extraction and analysis were performed on 44 articles that met our inclusion criteria. RESULTS: The findings highlighted rates of workplace ableism and racism (including discrimination allegations and perceived discrimination); types and forms of experiences arising from the intersection of ableism and racism (including unique individual stereotyping and systemic and institutional discrimination); and the role of other demographic variables. The intersection of ableism and racism impacted labour market outcomes, well-being in the workplace, and career/professional advancement. CONCLUSIONS: Our review highlights the need for greater in-depth research focusing explicitly on the intersection of ableism and racism (and of other forms of discrimination), to better understand and address the barriers that racialized people with disabilities face in employment.IMPLICATIONS FOR REHABILITATIONThe experiences of racialized people with disabilities have been under explored, and clinicians and rehabilitation specialists should consider incorporating intersectionality into their practices to better understand and serve these populations.Ableism and racism do not operate in isolation, and clinicians and other professionals need to be aware that racialized people with disabilities may face unique challenges and barriers as a result.Service providers should aim to address gaps and inequities in services faced by racialized people with disabilities which may prevent them from finding and/or maintaining meaningful employment.

Exploring the experiences of ableism among Asian children and youth with disabilities and their families: a systematic review of qualitative studies.

PURPOSE: Asian children and youth with disabilities often experience multiple barriers, stigmas and discrimination within and outside their families; yet less is understood about their lived experiences. This systematic review explored the experiences of ableism among Asian children and youth with disabilities and their families. METHODS: We conducted a systematic review of qualitative studies and a qualitative meta-synthesis. We searched six databases including Ovid Medline, Embase, PsychInfo, Healthstar, Web of Science, and Scopus. RESULTS: Forty-two articles met our inclusion criteria involving 17 countries and regions over a 22-year period. The findings were synthesized into four themes: (1) individual- and family-level ableism (i.e., stigma, fears, concerns, stress and anxieties, physical abuse, bullying, reduced engagement in community activities); (2) institutional-level ableism (i.e., barriers to accessing and navigating supports, ableist attitudes among service providers, unavailable services); (3) societal-level ableism (i.e., cultural and religious stigma, social rejection, discrimination, environmental and policy barriers); and (4) coping strategies (i.e., self-care activities, supports from family, friends and people with similar conditions, religious beliefs). CONCLUSIONS: Our results highlight the ableist experiences that Asian children and youth with disabilities and their caregivers often encounter and the strong need for further supports to address ableism using culturally responsive strategies.

Asian children and youth with disabilities encounter multiple forms of ableism at the individual, family and institutional levels.It is important for healthcare providers to customize resources that are culturally appropriate and aligned with the cultural and language backgrounds of the clients they serve.Clinicians and service providers should engage in culturally sensitive training and education to understand the barriers faced by the clients they serve.Clinicians and service providers should continue to advocate for marginalized and equity-deserving groups.

Development and Usability Testing of a Web-Based Workplace Disability Disclosure Decision Aid Tool for Autistic Youth and Young Adults: Qualitative Co-design Study.

BACKGROUND: Deciding whether and how to disclose one's autism at work is complex, especially for autistic youth and young adults who are newly entering the labor market and still learning important decision-making and self-determination skills. Autistic youth and young adults may benefit from tools to support disclosure processes at work; however, to our knowledge, no evidence-based, theoretically grounded tool exists specifically for this population. There is also limited guidance on how to pursue the development of such a tool in collaboration with knowledge users. OBJECTIVE: This study aimed to co-design a prototype of a disclosure decision aid tool with and for Canadian autistic youth and young adults, explore the perceived usability of the prototype (usefulness, satisfaction, and ease of use) and make necessary revisions, and outline the process used to achieve the aforementioned objectives. METHODS: Taking a patient-oriented research approach, we engaged 4 autistic youths and young adults as collaborators on this project. Prototype development was guided by co-design principles and strategies, and tool content was informed by a previous needs assessment led by our team, the autistic collaborators' lived experiences, considering intersectionality, research on knowledge translation (KT) tool development, and recommendations from the International Patient Decision Aid Standards. We co-designed a web-based PDF prototype. To assess perceived usability and experiences with the prototype, we conducted 4 participatory design and focus group Zoom (Zoom Video Communications) sessions with 19 Canadian autistic youths and young adults aged 16 to 29 (mean 22.8, SD 4.1) years. We analyzed the data using a combined conventional (inductive) and modified framework method (deductive) analysis to map the data onto usability indicators (usefulness, satisfaction, and ease of use). Grounded in participants' feedback, considering factors of feasibility and availability of resources, and ensuring tool fidelity, we revised the prototype. RESULTS: We developed 4 categories pertaining to the perceived usability of and participant experiences with the prototype: past disclosure experiences, prototype information and activities, prototype design and structure, and overall usability. Participant feedback was favorable and indicative of the tool's potential impact and usability. The usability indicator requiring the most attention was ease of use, which was prioritized when revising the prototype. Our findings highlight the importance of engaging knowledge users throughout the entire prototype co-design and testing processes; incorporating co-design strategies and principles; and having content informed by relevant theories, evidence, and knowledge users' experiences. CONCLUSIONS: We outline an innovative co-design process that other researchers, clinicians, and KT practitioners may consider when developing KT tools. We also developed a novel, evidence-based, and theoretically informed web-based disclosure decision aid tool that may help autistic youth and young adults navigate disclosure processes and improve their transitional outcomes as they enter the workforce.

The impact of climate change related extreme weather events on people with pre-existing disabilities and chronic conditions: a scoping review.

PURPOSE: People with disabilities experience a disproportionate impact of extreme weather events and there is a critical need to better understand the impact that climate change has for them. Most previous reviews focus on the risk of acquiring a new disability or injury after a climate-related event and not the impact on people with pre-existing disabilities or chronic conditions, which is the purpose of this study. METHODS: We conducted a scoping review while searching seven international databases that identified 45 studies meeting our inclusion criteria. RESULTS: The studies included in our review involved 2 337 199 participants with pre-existing disabilities and chronic conditions across 13 countries over a 20-year period. The findings demonstrated the following trends: (1) the impact on physical and mental health; (2) the impact on education and work; (3) barriers to accessing health and community services (i.e., lack of access to services, lack of knowledge about people with disabilities, communication challenges, lack of adequate housing); and (4) coping strategies (i.e., social supports and connecting to resources) and resilience. CONCLUSIONS: Our findings highlight the critical need for rehabilitation clinicians and other service providers to explore opportunities to support their clients in preparing for climate-related emergencies.

Rehabilitation clinicians and community service providers are in a good position to potentially assess people with disabilities for their preparedness for extreme weather events.Rehabilitation clinicians could look for opportunities to educate themselves and their clients about available resources related to extreme weather events and preparedness.Rehabilitation and community service providers could seek to partner with local organizations to support their clients with disabilities.Rehabilitation health care providers might consider advocating for the inclusion of people with disabilities in climate justice responses at all levels of government (e.g., local, regional and national).

Ableism and Workplace Discrimination Among Youth and Young Adults with Disabilities: A Systematic Review.

PURPOSE: Young people with disabilities are persistently under-employed and experience concerning rates of discrimination and ableism in looking for work and within the workplace. Focusing on youth is salient because rates of ableism are often higher among younger ages compared to older. The objective of this systematic review was to explore the experiences and impact of workplace discrimination and ableism among youth and young adults with disabilities. METHODS: Systematic searches of seven databases from 2000 to 2021 were conducted. Four reviewers independently applied the inclusion criteria, extracted the data and rated the study quality. RESULTS: Of the 39 studies meeting our inclusion criteria, they represented 516,281 participants across eight countries over a 20-year period. The findings highlight the rates of workplace ableism, factors affecting workplace ableism (i.e., type of disability, gender, education level, lack of employers' knowledge about disability), ableism in job searching and anticipated ableism. The review also noted the impact of workplace ableism, which included pay discrimination, lack of job supports and social exclusion, job turnover and unemployment, and discrimination allegations and charges. CONCLUSIONS: Our findings reveal the stark prevalence of workplace ableism among youth and young adults with disabilities. There is an urgent need for further in-depth research to understand youth's lived experiences of ableism and the development of solutions to address it so they can be included in a meaningful and respectful way in the workplace.