Ariel E. Schwartz

Background: Adults with intellectual and/or developmental disabilities are disproportionately excluded from participation in research, consequently increasing disparities experienced by this group. Gatekeepers, individuals who control access to research participation opportunities, may either support or pose a barrier to inclusion in research. We sought to understand how gatekeepers serve as supports and barriers to the participation of people with intellectual and/or developmental disabilities in research and the factors that may drive their actions. We also sought to identify approaches to interacting with gatekeepers that promoted the sharing of research participation opportunities.Methods: We conducted a scoping review of manuscripts published between January 2009 and September 2024 describing gatekeeping during recruitment for adults with intellectual and/or developmental disabilities in social/behavioural research. We conducted content analysis of 22 manuscripts to identify ‘gate opening’ actions (actions that support research participation) and ‘gate closing’ actions (actions that pose a barrier to research participation) at the point of recruitment. We also identified approaches researchers took when interacting with gatekeepers to promote gate opening actions.Results: Gatekeepers' attitudes (e.g., valuing research) and knowledge about prospective participants were associated with gate opening actions. Gatekeepers' attitudes of mistrust of researchers and/or research, deprioritisation of research and presumed incapacity of people with intellectual and/or developmental disabilities to consent to, participate in and/or benefit from research participation were associated with gate closing actions. Gatekeepers' lack of information (e.g., about research and prospective participants) was also associated with gate closing actions. Restrictive organisational policies and gatekeepers' lack of resources (e.g., time) were also associated with gate closing actions. Approaches for interacting with gatekeepers that may foster gate opening actions included: addressing gatekeeper concerns, educating gatekeepers about the benefits of research participation and developing relationships with gatekeepers.Conclusion: We identified several malleable factors that may drive gate opening and gate closing actions. Enhanced collaboration between researchers and gatekeepers may foster greater opportunities for individuals with intellectual and/or developmental disabilities to learn about research opportunities.

Background: Young adults with intellectual and/or developmental disabilities lack access to mental health supports. Peer‐delivered services may fill this gap. We adapted a theory‐driven and evidence‐based peer mentoring intervention for virtual‐delivery and investigated its acceptability and participants' preliminary response.Methods: Twelve young adults with intellectual and/or developmental disabilities participated in the 16‐week intervention and completed outcome measures at pre‐mentoring, post‐mentoring and 1‐month follow‐up. To evaluate acceptability, participants completed interviews and a survey. Preliminary response was measured with the Alexithymia Questionnaire for Children and PROMIS short forms (Self‐efficacy for Managing Emotions, Anxiety, and Physical Stress).Results: Participants felt emotionally supported, increased self‐understanding, and learned to use coping strategies. Participants reported improvements in alexithymia, self‐efficacy for managing emotions and anxiety; no changes were observed for physical stress symptoms.Conclusions: Participants were satisfied with peer mentoring and data suggest it may have promise to support development of skills that support mental health outcomes.

Aim: To evaluate the structural validity, internal reliability, and measurement invariance of the Pediatric Evaluation of Disability Inventory – Patient Reported Outcome (PEDI‐PRO), a measure of functional performance of discrete tasks required to participate in everyday life situations important for adulthood.Method: This was a cross‐sectional study with 306 young people aged 14 to 22 years (mean 18 years 10 months, SD 2 years 5 months) with developmental disabilities (43.1% autism spectrum disorder only, 23.9% intellectual disability, 17.6% other disability, 11.4% both autism spectrum disorder and intellectual disability, 3.9% missing) completed the PEDI‐PRO. Following COnsensus‐based Standards for selection of health Measurement INstruments (COSMIN) criteria, we conducted a confirmatory factor analysis, applied a Rasch rating‐scale model, examined Cronbach's alpha, Rasch person reliability and separation coefficients, and differential item functioning (DIF).Results: Structural validity was good for the daily activities and mobility domains, and acceptable for the social/cognitive domain. The 3‐point Likert response scale functioned as intended. All domains demonstrated acceptable internal consistency on all criteria. One or two items in each domain demonstrated DIF, but the impact on all domain scores was less than 1.0 threshold.Interpretation: The cognitively accessible design and innovative conceptual measurement framework probably contributed to these promising findings. The PEDI‐PRO addresses a gap in high‐quality patient‐reported outcome measures that assess priority outcomes for young people with developmental disabilities.

My name is Jacob Myers, and in this article, I describe my research experiences over the last 10 years. I like doing research because I get into the details and figure out answers to questions in research studies. I have worked on two main projects: making the Pediatric Evaluation of Disability Inventory-Patient Reported Outcome (PEDI-PRO) and Research Ethics for All. I also do projects with other researchers at other universities. In this article, I also offer suggestions on how to work together as a team and how to be sure that people with disabilities are meaningfully included on research teams. It’s important for people with disabilities to do research because they can relate to the studies and the participants. I hope people with and without disabilities can keep being a part of research to help their communities to make positive changes.