"I Wish This Tool Was Available to Me Sooner": Piloting a Workplace Autism Disclosure Decision-Aid Tool for Autistic Youth and Young Adults.

Background: For autistic youth and young adults, deciding whether to disclose their autism at work may be complex since they are newly entering the workforce and are at an impressionable developmental period. Decision-aid tools can help someone make a choice regarding a topic/situation. We developed a workplace autism disclosure decision-aid tool called DISCLOSURE (Do I Start the Conversation and Let On, Speak Up, and REveal?) to support autistic youth and young adults navigate disclosure decision-making. In this study, we aimed to assess the DISCLOSURE tool's (1) impact on decision-making and self-determination capabilities and (2) usability, feasibility, and acceptability. Methods: This was a single-arm pre-post pilot study. The DISCLOSURE tool comprises three interactive PDF documents and videos. Thirty participants (mean age of 23.5 years) completed online surveys before and after interacting with the DISCLOSURE tool. We used descriptive statistics for usability, feasibility, and acceptability. We calculated the Wilcoxon signed rank and paired t-tests to determine pre-post changes in decision-making and self-determination capabilities (Decisional Conflict Scale-Low Literacy Version [DCS-LL]; adapted Arc's Self-Determination Scale). We analyzed open-ended data using conventional (inductive) content analysis. Results: There were significant decreases in DCS-LL total and subscale scores (p < 0.0001) and a significant increase in Arc's total score (p = 0.01), suggesting important improvements. There were no significant increases for Arc's psychological empowerment and self-realization subscales (p = 0.05; p = 0.09). Median scores (4.0/5.0) indicate that participants agreed that the DISCLOSURE tool is acceptable, feasible, and meets the usability criteria. We developed four categories to describe the open-ended data: (1) disclosure capabilities, (2) the role of others, (3) positive tool impact and feedback, and (4) minimal tool impact and constructive feedback. Discussion: Findings are suggestive of the DISCLOSURE tool's ability to support workplace autism disclosure decision-making. Future studies should ascertain the DISCLOSURE tool's effectiveness, explore others' feedback (e.g., employers), and how to incorporate the tool into relevant employment and vocational programs.

Why is this topic important? Autistic youth and young adults face a dilemma when starting their first jobs: should they disclose their autism at work? This is a complicated decision and involves considering many factors, benefits, and risks. Our team developed a decision-aid tool to help with this decision-making process called DISCLOSURE (Do I Start the Conversation and Let On, Speak Up and REveaL?). This study is important because it is the first to assess the DISCLOSURE tool and explore if it may be helpful. What is the purpose of this article? This study had two main goals. First, we assessed if the DISCLOSURE tool helps to build self-determination and decision-making knowledge, skills, and confidence. Second, we explored if participants thought that the DISCLOSURE tool is usable, acceptable, and can be used in the real world (feasible). What did the researchers do? We recruited 30 participants (average age of 23.5 years) to complete two online surveys­one before and one after using the DISCLOSURE tool. We analyzed the data to observe if there were changes in decision-making and self-determination knowledge, skills, and confidence. We also explored how participants rated the acceptability, feasibility, and usability of the DISCLOSURE tool. We read through open-ended answers to group them into categories. What did the researchers find? We found important improvements in participants' decision-making knowledge, skills, and confidence. The DISCLOSURE tool shows promise to improve self-determination. Participants agreed that the DISCLOSURE tool is usable, acceptable, and feasible. Many participants said that the DISCLOSURE tool can help them make disclosure decisions at work. Some participants said that the tool was not as helpful for them. This is because they already had disclosure knowledge and experience. Overall, the study results suggest that the tool may support some autistic young people with the disclosure decision-making process. What do these findings add to what is already known? Few tools exist that support disclosure decision-making. Research also shows that young autistic people find it hard to make autism disclosure decisions at work and may need help. This study is the first to assess a tool that may close important gaps and help autistic young people make disclosure choices. What are potential weaknesses in the study? We need to continue testing the DISCLOSURE tool since this is the first time that we assessed it. We also missed some important perspectives in this study. Most participants were white, cisgender women, or nonbinary from Ontario, Canada, and needed internet and a tech device to take part. How will these findings help autistic young people now or in the future? Results show that the DISCLOSURE tool may help autistic youth and young adults make disclosure choices at work. We will continue to assess the DISCLOSURE tool to make sure it is effective. Autistic youth and young adults could use the DISCLOSURE tool in the future to help guide their disclosure choices at work. Relevant service providers could also use the DISCLOSURE tool with their autistic clients.

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.

Using the COM-B Model and Theoretical Domains Framework to Understand Workplace Disclosure Experiences, Influencers, and Needs Among Autistic Young Adults.

For autistic young adults, deciding whether to disclose their autism at work is complex. Minimal research explores what they need to support disclosure and what influences decisions. To understand disclosure needs and influencers, we explored (i) disclosure decision-making experiences and (ii) perceptions of the disclosure process among autistic young adults. We conducted focus groups using the Capability, Opportunity, Motivation, Behaviour Model and Theoretical Domains Framework (TDF). We analyzed data from 23 participants and mapped onto the TDF to develop five themes: (1) workplace environment, (2) perceptions of disclosure outcomes, (3) personal factors and identity, (4) disclosure-related ambitions and determination, and (5) know-hows of disclosure. Future work should prioritize developing disclosure decision-making supports and investigate employer roles in fostering inclusive workplaces.

Exploring the lived experiences of ethnic minority youth with disabilities: a systematic review and meta synthesis of qualitative data.

PURPOSE: Racial and ethnic minority youth with disabilities often encounter more challenges and poorer health, social and vocational outcomes compared to white youth and yet, relatively little is known about their lived experiences. The purpose of this study was to explore the experiences of ethnic minority youth and young adults with disabilities. METHODS: We conducted a systematic review of qualitative data with eight international databases assessed by four reviewers. RESULTS: Twenty-one studies met the inclusion criteria, which involved 373 youth and young adults, across four countries over a 20-year period. We identified the following themes: (1) accessing and navigating services (i.e., environmental barriers; lack of supports, resources and information); (2) perceptions of disability (i.e., cultural adjustment and tensions between cultures; differing priorities for independence); (3) systemic factors (i.e., language and communication; stigma, discrimination and racism); (4) coping (i.e., reframing; and family involvement and support); and (5) intersectionality (i.e., disability, race and ethnicity, gender, and socio-economic status). CONCLUSIONS: Our findings highlight how racial and ethnic minority youth with disabilities encounter many challenges in dealing with their condition and the urgent need for further research to develop a deeper understanding of their needs so that clinicians and service providers can enhance supports.IMPLICATIONS FOR REHABILITATIONRacial and ethnic minority youth with disabilities encounter different challenges than other youth, such as cultural adjustment, racism and culturally inappropriate services.Clinicians and service providers should be cognizant that ethnic minority youth may need different supports and resources as they grapple with tensions between cultures.Clinicians, educators and service providers should consider the complexity of how disability interacts with many other factors, such as race, ethnicity, gender and socio-economic status.

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.

Exploring 10 years of dissemination of the F-words for Child Development: A multifaceted case study.

BACKGROUND: There is growing interest in exploring how to move research findings into practice. Since 2014, a team of families and researchers has been working to promote and study the dissemination of the "F-words for Child Development" (Function, Family, Fitness, Fun, Friends, and Future). This case study describes our dissemination strategies and uses the Diffusion of Innovation theory to understand the factors contributing to the uptake of the F-words-a function-promoting, strengths-based, and family-centred innovation in child health and development. METHODS: Between November 2011 and November 2021, we collected data from multiple sources: our dissemination strategies, including affiliated documents/artefacts (e.g., videos and presentations) and evaluation data (e.g., surveys and Google/video analytics). We used a two-step analysis: (1) a chronological time series to describe the processes involved along with indicators of dissemination over time (e.g., increase knowledge and awareness); and (2) Diffusion of Innovation theory to explore the factors that contributed to the uptake of the F-words. RESULTS: Multifaceted dissemination strategies were essential to raise awareness and increase families' and service providers' knowledge of the F-words. These included three primary strategies: (i) development and distribution of educational materials; (ii) presentations at educational meetings; and (iii) educational outreach visits. Additional strategies, such as the use of mass media, collaboration with early adopters/champions, and the involvement of family members further supported dissemination efforts. Diffusion of Innovation factors (innovation characteristics, time, social systems, and communication channels) all contributed to the uptake of this innovation. CONCLUSIONS: Purposeful planned dissemination practice, to increase knowledge and awareness of an innovation, is an important step in the knowledge translation process. Over a period of 10 years, through the use of multiple dissemination strategies conducted in partnership with families and service providers, the F-words have spread globally. Diffusion of Innovation theory has served to help understand how and why the F-words are being shared and adopted around the world.

Unravelling the Complexities of Workplace Disclosure Among Persons with Non-Visible Disabilities and Illnesses: A Qualitative Meta-Ethnography.

BACKGROUND: Deciding whether and how to disclose a disability at work for persons with non-visible disabilities and illnesses involve complex processes. Research has focused on antecedents and outcomes of disclosure. More research is needed to understand the lived experiences related to disclosure decision-making and actual navigation of disclosure and concealment at work. PURPOSE: To understand the experiences of persons with non-visible disabilities and illnesses regarding workplace disclosure decision-making, navigating disclosure and/or concealment, and experiential differences across disability and illness types, ages, geographic locations, and genders. METHODS: We conducted a qualitative meta-synthesis using Noblit and Hare's seven steps of meta-ethnography. Searches were conducted via six databases. Studies were analyzed to develop conceptual categories, third-order constructs (themes), and a line-of-argument with comparisons drawn from the disclosure decision making model, disclosure process model, and consideration of disability and illness types, genders, ages, and geographic locations. RESULTS: Twenty-four studies were included involving 489 participants, aged 16 to 81, from nine countries, focusing on one non-visible disability or illness, or multiple. We developed four themes for the disclosure decision-making process (self- and other-focused, experiential, and environmental/workplace factors) and two themes for the disclosure/concealment event (disclosure/concealment logistics and timing) and noted emerging trends across ages, genders, disability and illness types, and geographic locations. CONCLUSIONS: Knowledge obtained could be used among professionals who support persons with non-visible disabilities and illnesses to help them navigate disclosure at work, and to consider the role of age, genders, disability and illness types, and geographic locations on disclosure.

A guiding process to culturally adapt assessments for participation-focused pediatric practice: the case of the Participation and Environment Measures (PEM).

PURPOSE: There is unprecedented opportunity to evaluate children's participation in diverse cultural contexts, to enhance cross-cultural research, advance the delivery of culturally responsive pediatric rehabilitation, and translate new knowledge on a global scale. The participation concept is complex and heavily influenced by a child's context. Therefore, effectively capturing the participation concept requires valid, reliable, and culturally sensitive participation-focused measures. This perspective paper proposes a structured process for culturally adapting measures of participation for children and youth with disabilities. METHODS: Elements of the Applied Cultural Equivalence Framework and Beaton and colleagues' six-step process were used to create a guiding process for culturally adapting a Participation and Environment Measure (PEM) while drawing on two distinct cultural contexts. This process included forward and back language translations, and semi-structured cognitive interviews, to develop adapted versions of the PEM that are ready for psychometric validation. RESULTS: Common challenges to culturally adapting PEM content and administration are identified and methodological strategies to mitigate these challenges are proposed. CONCLUSIONS: The proposed process can guide rehabilitation specialists and researchers in adapting participation measures that are suitable for their culture. Such a process can facilitate scalable implementation of evidence-based tools to support participation-based practice in the rehabilitation field.Implications for RehabilitationThe use of a systematic process can harmonize efforts by rehabilitation researchers and service providers to effectively culturally adapt pediatric participation measures to optimize its impact for culturally sensitive research and practice targeting participation.Two distinct, yet complementary, illustrative exemplars showcase the range of considerations and strategies, such as by conducting consecutive rounds of cognitive interviews, when teams use this systematic process to cultural adapt a pediatric participation measure.The systematic process outlined in this paper promotes rigor in achieving all elements of cultural equivalency, when feasible, to best ensure that the participation measure is suitable for use in the target cultural context.