How can we reach long-lasting inclusive participation for all? A vision for the future.

In 2022, an international conference was held focusing on 'participation'. We shared current evidence, identified knowledge gaps and worked together to understand what new knowledge and community and practice changes were needed. This brief communication is a summary of the conference delegates' discussions. We present the key assumptions we make about participation and propose what is needed to create change for societies, communities, families and individuals. While we have some robust evidence to support participation approaches, more is needed, and it is everyone's responsibility to build an inclusive society where participation for all is the reality.

Development and content validity of the Person Experiences Interview Survey (PEIS): a measure of the mental health services experiences of people with developmental disabilities.

Purpose: People with developmental disabilities and mental health service experiences have a right to be included in healthcare decisions, including the evaluation of their mental health services and providers. However, few self-report measures address this need. This study aimed to fill this gap by developing and evaluating the content validity, including comprehension, relevance, and comprehensiveness, of the Person Experiences Interview Survey (PEIS) with people with developmental disabilities and mental health experiences. Methods: The research team established a measurement framework based on the Family Experiences Interview Survey (FEIS), resulting in 21 PEIS items that were written in collaboration with young adults with developmental disabilities and mental health service experiences. Comprehension, relevance, and comprehensiveness were evaluated through cognitive interviews with people with developmental disabilities and mental health service experiences (respondents; n = 9) ages 23-49 years. Comprehensiveness and relevance were also evaluated in focus groups with family caregivers (n = 9) and mental health providers (n = 10) who serve this population. Two researchers independently coded open-ended responses to the PEIS for comprehension. A content validity index (CVI), indicating relevance, was calculated for each participant group for each item, and comprehensiveness was rated for item sets. Results: Fifteen of the 21 items met the criteria of ≥80% comprehension, with 89-100% of responses containing all or some intended information. All items met the CVI ≥80% criterion in at least two of the three groups. In all item sets, between 1 and 4 family members or providers felt one question was missing. Respondents used the response scale in a manner that corresponded with their open-ended descriptions, and family caregivers and providers had positive feedback about the response scale's visual cues and number of choices. Using these findings, four items were removed and six items were revised, resulting in a 17-item measure. Conclusion: This study presents a novel and promising measure, the Person Experiences Interview Survey (PEIS). It also demonstrates that the employment of accessible methods allows people with developmental disabilities to meaningfully evaluate mental health services and providers. The PEIS shows great promise for application in the field by engaging those directly involved in the evaluation of mental health services and providers.

Evaluation of telemental health services for people with intellectual and developmental disabilities: protocol for a randomized non-inferiority trial.

BACKGROUND: Roughly 40% of those with intellectual/developmental disabilities (IDD) have mental health needs, twice the national average. Unfortunately, outpatient mental health services are often inaccessible, increasing reliance on hospital-based services. While telemental health services hold potential to address this gap, little is known about the effectiveness of telemental health for the diversity of persons with IDD, especially as it relates to crisis prevention and intervention services. Accordingly, the aims of this study are to: (1) compare telemental health versus in-person crisis prevention and intervention services among people with IDD; and (2) understand if outcomes vary across subpopulations, in order to identify potential disparities. METHODS: This study will take place within START (Systemic, Therapeutic, Assessment, Resources, and Treatment), a national evidence-based model of mental health crisis prevention and intervention for people with IDD. A total of 500 youth and adults, located across nine states, will be randomized 1:1 to telemental health vs. in-person. Participant inclusion criteria are ages 12-45 years, living in a family setting, and newly enrolled (within 90 days) to START. Outcomes will be assessed, using a non-inferiority design, for up to 1 year or until discharge. The intervention is comprised of four components: (1) outreach; (2) consultation/coping skills; (3) intake/assessment; and, (4) 24-hour crisis response. The in-person condition will deliver all components in-person. The telemental health condition will deliver components 1 & 2, via telephonic or other communication technology, and components 3 & 4 in-person. Outcomes include mental health crisis contacts, mental health symptoms, emergency psychiatric service use, perceived quality of mental healthcare, and time to discharge. DISCUSSION: To our knowledge, this will be the first trial of a telemental health crisis program for the IDD population. The study will be executed by an interdisciplinary team of experts that includes persons with lived experience of disability. Understanding the benefits of specific telemental health methods has important implications to the design of interventions. This telemental health study offers promise to address disparities in access to mental health care for people with IDD across diverse racial, ethnic, linguistic, and cultural groups. TRIAL REGISTRATION: Clinicaltrials.gov ( #NCT05336955 ; Registration Date: 4/20/2022).

Telehealth information and communication technology access for family caregivers of people with intellectual and developmental disabilities and mental health needs.

BACKGROUND: Telehealth is increasingly used to deliver mental health services. However, the potential benefits of telehealth for people with intellectual and developmental disabilities and mental health needs (IDD-MH) may not be fully realized. This study addresses gaps in knowledge about access to information and communication technologies (ICTs) for individuals with IDD-MH from the perspective of their family caregivers. OBJECTIVE: What factors are associated with access to ICTs among family caregivers of people with IDD-MH who use START services? METHODS: Retrospective analysis of cross-sectional interview data gathered for START use at the onset of COVID-19. START is a crisis prevention and intervention evidence-based model for people with IDD-MH implemented across the USA. To assess needs during COVID-19, START coordinators conducted interviews with 1455 family caregivers between March and July 2020. A multinomial regression model examined correlates of ICT access, as indicated by an index (poor, limited, and optimal access). Correlates included the level of IDD, age, gender, race, ethnicity, rural setting of the person with IDD-MH, and caregiver status. RESULTS: Age (ages 23-30 years) and sole caregiver status were significantly associated with limited access (both p ≤ .001). Age (ages 23-30 years and ≥31 years, p < .001), race (Black or African American, p = .001), ethnicity (Hispanic, p = .004), and sole caregiver status (p < .001) were significantly associated with poor access. CONCLUSIONS: Disparities existed in ICT access for adults, specific racial/ethnic groups, and sole caregiver households. Healthcare policy related to telehealth must consider how ICT access can be equitable for all users with IDD-MH.

Developing and evaluating a toolkit of strategies to support remote inclusive research teams.

Research teams must collaborate with people with intellectual and developmental disabilities to identify effective and inclusive responses to the COVID-19 pandemic and other public health emergencies. Collaborating remotely requires telecommunication and other technologies. We designed and evaluated a digital "Toolkit for Remote Inclusive Research" to provide research teams with evidence-informed strategies to make remote research accessible to and inclusive of people with intellectual and developmental disabilities. First, we completed a rapid scoping review to identify technology used by people with intellectual and developmental disabilities on collaborative research teams. Second, we designed a digital toolkit featuring 23 strategies identified in the review. Third, six inclusive researchers evaluated the toolkit. We illustrate how our team used these evidence-informed strategies during the past year to develop this and other tools to support inclusive research.

Participation-related constructs and participation of children with additional support needs in schools.

AIM: To investigate associations between participation-related constructs and participation frequency and involvement in inclusive schools. METHOD: In this cross-sectional study, teachers of children with additional support needs, including intellectual disability, autism, and learning difficulties, completed measures. Participation-related constructs were measured using the School Participation Questionnaire; participation frequency and involvement were measured using the Participation and Environment Measure for Children and Youth. A series of multilevel linear mixed-effects regression models with maximum likelihood estimates and bootstrap confidence intervals with p-values were obtained. Final models included participation-related constructs and participation, controlling for demographic and diagnostic confounders (including age, sex, language, level of school support, and autism). RESULTS: Six hundred and eighty-eight children (448 [65.1%] males; mean age 8 years 7 months [range 4 years 10 months-12 years 13 months, standard deviation 2 years 1 months]) were assessed by 252 teachers. Across a series of models, participation-related constructs were consistently associated with more intensive participation (competence, environment, identity p < 0.001; symptoms p = 0.007), independent of confounders. More frequent participation remained associated with three of four participation-related constructs (competence, identity p < 0.001; environment p = 0.021). Age (p = 0.046), language (p = 0.002), and level of school support (p = 0.039) also remained significantly associated with frequency of participation. INTERPRETATION: Children with additional support needs in inclusive schools may have several participation barriers. Policies and interventions to improve participation are needed. WHAT THIS PAPER ADDS: Across a series of models, participation-related constructs were associated with frequency and intensity of participation. Only participation-related constructs were associated with participation intensity. Demographic and diagnostic variables were associated with frequency, not intensity, of participation. Teacher assessment is valid for assessment of participation and participation-related constructs.

Psychometric properties of the School Participation Questionnaire: Testing a measure of participation-related constructs.

AIM: To explore concurrent validity, convergent validity, interrater reliability, test-retest reliability, and Rasch model analysis of the School Participation Questionnaire (SPQ), a tool for teachers to assess personal and environmental determinants of school participation. METHOD: Teachers of children with additional support needs, including intellectual disability, autism, and learning difficulties completed measures. Data were collected using the SPQ and the Participation and Environment Measure for Children and Youth (PEM-CY). Test-retest and interrater reliability were assessed using intraclass correlation coefficients (ICCs). Internal consistency was assessed with Cronbach's alpha. Concurrent and convergent validity were explored via correlations with the PEM-CY. Further psychometrics were examined using a Rasch model. RESULTS: One hundred and eighty-seven children (136 [72.7%] male; mean age 9y [range 5y 6mo-12y 10mo, SD 2y]) were assessed by 67 teachers. Cronbach's alpha, test-retest, and interrater reliability were acceptable-excellent across each SPQ scale (alphas=0.89, 0.9, 0.94, 0.79; test-retest ICCs=0.64, 0.61, 0.78, 0.62; interrater ICCs=0.85, 0.71, 0.90, 0.81). Concurrent and convergent validity were confirmed with significant positive correlations between SPQ and PEM-CY. After Mokken and Rasch model analysis, person and item reliability were good, and unidimensionality was confirmed. Mean administration time was 8.2 minutes. INTERPRETATION: The results suggest that the SPQ is a rapid, reliable, and valid tool for assessment of participation-related indicators in schools.

How people with intellectual and developmental disabilities on collaborative research teams use technology: A rapid scoping review.

BACKGROUND: We conducted a rapid scoping review to identify how inclusive research teams use technology during the research process that could support remote collaboration during public health emergencies like the COVID-19 pandemic. METHOD: We searched three databases and conducted a hand search. Two independent reviewers screened 1498 abstracts and titles for inclusion criteria; 81 full text articles were further reviewed; 47 were included. We extracted information about each type of technology, categorised technology used during the research process, and documented described accommodations. RESULTS: We identified 47 articles and 94 examples of technologies used by people with intellectual and developmental disabilities throughout the research process: team formation and team function (38), data collection (19), data analysis (17) and dissemination (20). CONCLUSIONS: Technology use by team members with intellectual and developmental disabilities demonstrates promise for remote research collaborations during public health and climate emergencies and teams with members living in diverse locations.

Inclusive approaches to developing content valid patient-reported outcome measure response scales for youth with intellectual/developmental disabilities.

BACKGROUND: Patient-reported outcome measures (PROMs) are increasingly used in health care to evaluate service quality and client progress. Response scales are a critical component of PROM content validity and must be designed to be relevant and comprehensible by users. METHODS: In collaboration with eight youth co-researchers with intellectual/developmental disabilities ages 14-21, we used an iterative, three-stage approach to develop and select a response scale for the PEDI-PRO. Stages: 1) inclusive development of response scale options; 2) Collecting data about response scale options during focus groups with youth with intellectual/ developmental disabilities (n = 62); and 3) Analysing data to refine response options. RESULTS: Through two cycles of the three-stage process, the inclusive research approach led to the development of a content valid response scale that describes functional performance of everyday activities ("very easy," "a little easy," "a little hard"). CONCLUSION: An inclusive research approach can support the development of content valid PROM scales. We identified four broad strategies that supported youth co-researchers to engage in this response scale development process: universal design for learning, use of lived experiences, breaking down tasks, and peer support. Researchers may adopt and/or adapt the accessible inclusive research approaches described in this manuscript for measurement development and other research projects.

Adoption of patient-reported outcome measures with youth with intellectual/developmental disabilities: Contextual influences and practice patterns.

BACKGROUND: The purpose of this study was to identify potential barriers to patient reported outcome measure (PROM) adoption with youth and young adults with intellectual and/or developmental disabilities (IDD) and to understand current PROM adoption patterns of paediatric practitioners working with this population. METHODS: We used a web-based survey to collect data from paediatric practitioners who work with youth with IDD about factors influencing the adoption of PROMs and the frequency of PROM use across age groups (elementary, middle school and high school/transition age) and practice settings (school and rehabilitation). RESULTS: A total of 113 paediatric practitioners (occupational therapist = 48, physical therapist = 32, physician = 16, other = 17) responded to the survey with an average of 15 years of experience working with youth ages 8-21 with IDD. Accessibility and appropriateness, psychometric evidence, and time were most frequently ranked among the top three factors that influence practitioners' adoption of PROMs. Practitioners reported 'never or rarely' using PROMs 39%-65% of the time across age groups. CONCLUSIONS: Our results suggest that paediatric practitioners may be infrequently using PROMs with youth with IDD because of perceived inaccessibility and time requirements of PROMs and practice-environment barriers, including access to evidence and caseload demands. Because PROMs can facilitate client-centred care, addressing these potential barriers to adoption may improve paediatric rehabilitation.

Usability and Reliability of an Accessible Patient-Reported Outcome Measure (PROM) Software: The Pediatric Evaluation of Disability Inventory-Patient-Reported Outcome (PEDI-PRO).

IMPORTANCE: Patient-reported outcome measures (PROMs) are used in rehabilitation to evaluate outcomes. We integrated a new PROM for transition-age youth with intellectual and/or developmental disabilities (IDD), the Pediatric Evaluation of Disability Inventory-Patient-Reported Outcome (PEDI-PRO), with a computer-delivered survey platform (Accessible Testing Learning and Assessment System) to enhance cognitive accessibility. OBJECTIVE: To evaluate the usability of the PEDI-PRO software and to investigate its reliability and acceptability to transition-age youth with IDD. DESIGN: Clinical field testing and a survey; repeated-observation test-retest design. SETTING: Clinicians evaluated the PEDI-PRO's usability in school and health care contexts; research staff conducted reliability and acceptability testing in natural settings. PARTICIPANTS: Occupational therapists (n = 12) and physical therapists (n = 2) administered the PEDI-PRO to 39 youths with IDD. Fifty-five transition-age youth with IDD (M age = 19.7) completed the PEDI-PRO twice. OUTCOMES AND MEASURES: Clinicians completed the System Usability Survey (SUS) and open-ended feedback. Youth provided feedback via a brief survey. RESULTS: The mean SUS rating was 84.00 (SD = 11.68), exceeding the industry standard. Intraclass correlations ranged from .80 to .83 across the three PEDI-PRO domains. Internal reliability (α) was .86-.90 across domains. Youth reported that they liked the accessibility features: interface images, button sounds, read-aloud audio, and rating category choices (M = 88.8%, SD = 5.1%). CONCLUSIONS AND RELEVANCE: The PEDI-PRO supported transition-age youth with IDD to reliably report perceived functional performance. The accessible software was favorably perceived by both clinicians and youth. WHAT THIS ARTICLE ADDS: Design features of the PEDI-PRO make it easy to use in practice with transition-age youth with IDD. The PEDI-PRO's cognitively accessible administrative design, including step-by-step instructions for teaching PROM use and a self-reflective questioning technique, could serve as a training model for this and other PROMs.

Development, psychometrics and feasibility of the School Participation Questionnaire: A teacher measure of participation related constructs.

BACKGROUND: We report development of the SPQ (School Participation Questionnaire) a teacher-completed measure of participation related constructs for schools. The SPQ was developed to support participation-related assessment, interventions, and research in the inclusive school context. METHODS: Several iterative steps were undertaken. An international panel of experts reviewed content validity. A 66-item pilot questionnaire was administered in schools. Mokken and Rasch model analysis were applied. Internal consistency was assessed using Cronbach's alpha. Analyses were conducted on associations with teacher and child demographic variables. Feedback was sourced from users. Participants were teachers of 101 children (5-12 years old) with a range of disabilities, including intellectual disability, autism spectrum disorder and learning difficulties. RESULTS: Four participation-related dimensions of the SPQ were confirmed. Rasch person and item reliability were good, and 2-4 strata were confirmed per scale. Internal consistency was good (all scales, Cronbach α > 0.8). Mean administration time was 11.7 min. Mean SPQ scores were independent of teacher characteristics. A significant effect of school support level, eligibility for free school meals and gender was found. Through synthesising analytic results and feedback, a new 46-item tool was obtained. CONCLUSION: The results of this study provide evidence of acceptability, practicality and validity. The SPQ is the first tool developed to assess participation related constructs in schools, and it contains novel information not given by other assessments. The SPQ may be used by practitioners and researchers to understand and improve the participation of children with a range of disabilities in schools.

Asian Immigrant Parents' Role Enactment While Accessing and Using Services for Their Child With Developmental Disabilities in the United States: A Meta-Synthesis Study.

We conducted a meta-synthesis to explore how Asian immigrant parents in the United States enact their perceived parental role while using health and educational services for their child with developmental disabilities. We identified 11 qualitative studies for analysis, and examined these studies using a constant comparative approach and thematic analysis informed by role theory and acculturation theory. Based on our analysis, five themes related to parents' role enactment emerged: (a) parents perceive a multifaceted parental role; (b) parents' individual factors influence their role enactment; (c) system factors influence parents' role enactment; (d) parents use coping strategies to address role dissatisfaction; and (e) parental role enactment is a continuously evolving process influenced by acculturation, which spirals them toward their ultimate goal of helping their child thrive. Findings can inform practitioners' and researchers' understanding of how to create a culturally safe environment to support Asian immigrant parents in realizing their parental role.

Stakeholder-driven approach to developing a peer-mentoring intervention for young adults with intellectual/developmental disabilities and co-occurring mental health conditions.

BACKGROUND: Young adults with intellectual/developmental disabilities and co-occurring mental health conditions (IDD-MH) experience significant mental health disparities. Barriers to services include transportation and stigma associated with services. Peer mentoring (PM) may be one solution to these barriers. METHODS: We conducted exploratory research to develop a PM intervention for young adults with IDD-MH by partnering with 3 young adults with IDD-MH and a seven-member advisory board. In addition, we conducted focus groups with mental health clinicians (n = 10), peer providers (n = 9), and transition specialists (n = 20) to identify the desired PM outcomes and features and content that may facilitate these outcomes. RESULTS: Prioritized outcome: identifying and utilizing leisure activities as coping strategies. PM features: mentors should use relationship- and outcome-driven actions to operationalize a mentee-centred approach. Features and content considerations: safety, mentor matching, degree of structure, mentor training and support, and collaboration with mentees' support teams. DISCUSSION: Findings are aligned with previous research on PM.

"That Felt Like Real Engagement": Fostering and Maintaining Inclusive Research Collaborations With Individuals With Intellectual Disability.

People with intellectual disability (ID) are increasingly involved in stakeholder-engaged research, such as "inclusive research" (IR). To understand the processes that foster and maintain IR with individuals with ID, we used a narrative interview approach with co-researchers with ID (n = 6) and academic researchers (n = 8). We analyzed the data using grounded theory principles. We then developed a model describing how contextual factors and team-level factors and processes coalesce to foster and maintain IR collaborations. We observed that team members' values and characteristics are foundational to IR and drive a commitment to accessibility. Contextual factors, including funding and partnership duration, influence teams' processes and structures. These processes and structures influence the extent to which co-researchers perceive the IR team to be cofacilitated or academic-facilitated. Co-researcher involvement is partially maintained by perceived personal and societal benefits. Optimizing the relationship between these factors may support involvement of people with ID in stakeholder-engaged research projects.

Understanding self-determination as a crucial component in promoting the distinct value of occupational therapy in post-secondary transition planning.

School-based occupational therapists are well-equipped to prepare adolescents to transition from the education system to work and live in their communities, but they report challenges in securing their place on post-secondary transition planning teams. We argue that occupational therapists' efforts to advocate for their role in post-secondary transition could be strengthened by a deeper engagement with what is considered 'best practice' in transition planning: improving students' ability and opportunity to exercise self-determination. In this commentary, we review the self-determination evidence-base; identify congruence between the underlying philosophies of self-determination and occupational therapy; and highlight gaps in existing self-determination models that occupational therapists are uniquely posed to fill by focusing on self-determination as they support transition age students.

Participation of children with disabilities in school: A realist systematic review of psychosocial and environmental factors.

BACKGROUND: In order to make informed decisions about how best to support children and young people with disabilities, effective strategies that facilitate active and meaningful participation in school are required. Clinical factors, diagnosis or impairments somewhat helpful in determining what should be provided in interventions. However, clinical factors alone will not offer a clear view of how to support participation. It is helpful then to look at wider psychosocial and environmental factors. The aim of this review was to synthesise evidence of psychosocial and environmental factors associated with school participation of 4-12 year old children with disabilities to inform the development of participation-fostering interventions. METHODS: A systematic search and synthesis using realist methods was conducted of published research. Papers had to include consideration of psychosocial and/or environment factors for school participation of children with disabilities. The review was completed in accordance with the Realist and Meta-narrative Evidence Syntheses: Evolving Standards (RAMESES) and Preferred Reporting Items for Systematic Review and Meta-Analysis (PRISMA) guidelines. Papers were identified via Boolean search of the electronic databases MEDLINE, CINAHL, PhycINFO and ERIC (January 2006-October 2018). Appraisal focussed on contributions in terms of whether the articles are appropriate for the review (relevance) and research quality (rigour). Data were analyzed using content and thematic analysis methods using a realist framework. A narrative synthesis of results was reported. RESULTS AND IMPLICATIONS: We identified 1828 papers in the initial search. Seventy two papers were included in the final synthesis. Synthesis of findings led to three overarching mechanisms representing psychosocial factors for children (1) identity (2) competence and (3) experience of mind and body. Environmental aspects (context) compromised five interrelated areas: (1) structures and organization, (2) peers, (3) adults, (4) space and (5) objects. Our synthesis provides insights on how professionals may organize efforts to improve children's participation. Consideration of these findings will help to proactively deal with suboptimal participation outcomes. Development of theoretically determined assessments and interventions for management of school participation are now required.

Youth's Perspective of Responsibility: Exploration of a Construct for Measurement with Youth with Developmental Disabilities.

AIMS: There is a need to develop self-reports that measure youth's responsibility for major life tasks. We examined if the Pediatric Evaluation of Disability Inventory-Computer Adaptive Test's (PEDI-CAT) operationalization of responsibility is salient to youth with developmental disabilities (DD). The PEDI-CAT defines responsibility as, "the extent to which the young person…take[s] control over organizing and managing major life tasks." METHODS: During six focus groups (n = 43), youth generated examples of behaviors and actions that demonstrated responsibility. Data were coded as "responsibility" or "discrete skills" per PEDI-CAT definitions. We reviewed examples in both categories and compared and contrasted how youth described responsibility. RESULTS: Youth's descriptions of responsibility aligned with the PEDI-CAT's responsibility construct 42.75% of the time. In these instances, youth perceived themselves as causal agents who had to make decisions and self-regulate to manage and organize major life tasks. Otherwise, youth described themselves as causal agents who adhered to rules, social norms, and expectations of others during the execution of discrete skills. CONCLUSIONS: Youth perceive themselves as responsible, causal agents during both the coordination and management of major life tasks and during the execution of discrete skills. As this is not aligned with the PEDI-CAT's operationalization of responsibility, there is a need to further explore youth's perceptions of responsibility prior to developing a self-report.

Development of the Pediatric Disability Inventory-Patient Reported Outcome (PEDI-PRO) measurement conceptual framework and item candidates.

BACKGROUND: To address the gap in patient reported outcome measures (PROMs) of functional performance appropriate for youth and young adults with developmental disabilities (DD) we developed the Pediatric Evaluation of Disability Inventory-Patient Reported Outcome (PEDI-PRO). AIM/OBJECTIVE: We used a participatory process to: (1) Develop the measurement conceptual framework; (2) Identify discrete functional tasks to include in the PEDI-PRO; and (3) Refine item candidates. METHODS: We collaborated with eight youth with DD over 33 months. These youth and university researchers explored the construct of functional performance, developed and refined items, and collected and analyzed data. We also conducted focus groups with youth with DD (n = 62) and rehabilitation professionals (n = 26), and consulted with PEDI measurement experts (n = 3). RESULTS: Youth's understanding of their functional performance is embedded in their experiences participating in everyday life situations. We developed 78 Daily Activities, 65 Social/Cognitive, and 52 Mobility item candidates that are linked to 11 everyday life situations to assess discrete functional tasks important to youth with DD and rehabilitation professionals. CONCLUSION AND IMPLICATIONS: As a result of our participatory development process, the PEDI-PRO's proposed conceptual framework and item candidates are grounded in the lived experience of youth with DD.