Ariel Schwartz

Feasibility of electronic peer mentoring for transition‐age youth and young adults with intellectual and developmental disabilities: Project Teens making Environment and Activity Modifications

BACKGROUND There is a need for mentoring interventions in which transition-age youth and young adults with intellectual and/or developmental disabilities (I/DD) participate as both mentors and mentees. Project TEAM (Teens making Environment and Activity Modifications) is a problem-solving intervention that includes an electronic peer-mentoring component. METHODS Forty-two mentees and nine mentors with I/DD participated. The present authors analysed recorded peer-mentoring calls and field notes for mentee engagement, mentor achievement of objectives and supports needed to implement peer mentoring. RESULTS Overall, mentees attended 87% of scheduled calls and actively engaged during 94% of call objectives. Across all mentoring dyads, mentors achieved 87% of objectives and there was a significant relationship between the use of supports (mentoring script, direct supervision) and fidelity. CONCLUSIONS Transition-age mentees with I/DD can engage in electronic peer mentoring to further practice problem-solving skills. Mentors with I/DD can implement electronic peer mentoring when trained personnel provide supports and individualized job accommodations.

Refining the Pediatric Evaluation of Disability Inventory–Patient‐Reported Outcome (PEDI‐PRO) item candidates: interpretation of a self‐reported outcome measure of functional performance by young people with neurodevelopmental disabilities

This study examined the item interpretability and rating scale use of the Pediatric Evaluation of Disability Inventory–Patient‐Reported Outcome (PEDI‐PRO) by young people with developmental disabilities. The PEDI‐PRO assesses the functional performance of discrete functional tasks in the context of everyday life situations.

Reducing barriers to Patient Reported Outcome Measures for people with cognitive impairments

The field of rehabilitation has increasingly called for the use of patient-reported outcome measures (PROMs) in research and practice. Given that many rehabilitation patients present with conditions associated with cognitive impairments, it is imperative to reduce barriers to PROM use for this population. The purpose of this article is to develop a comprehensive understanding of cognitive accessibility that can prospectively inform the design of PROMs. We put forth the following definition of cognitive accessibility for PROMs: cognitive accessibility is present when assessment design anticipates respondent variability in cognitive abilities and, to the greatest extent possible, reduces cognitive demands and/or supports cognitive processes to enable respondents with a range of cognitive abilities to interpret and respond to assessment items as intended. Our operationalization of cognitive accessibility in measurement in the field of rehabilitation is informed by 2 assumptions: (1) cognitive accessibility results from an interaction between the individuals capacities and the demands of the assessment and assessment context, and (2) individuals with cognitive impairments have the right to be involved in decisions about their lives, including health care decisions. This article proposes 3 design features that can be optimized for cognitive accessibility: content, layout, and administration procedures. We end with a discussion of next steps that the field of rehabilitation measurement can undertake to advance our understanding of cognitive accessibility.

Initial evaluation of the effects of an environmental‐focused problem‐solving intervention for transition‐age young people with developmental disabilities: Project TEAM

Project TEAM (Teens making Environment and Activity Modifications) teaches transition‐age young people with developmental disabilities, including those with co‐occurring intellectual or cognitive disabilities, to identify and resolve environmental barriers to participation. We examined its effects on young peoples attainment of participation goals, knowledge, problem‐solving, self‐determination, and self‐efficacy.

Patient‐reported outcome measures for young people with developmental disabilities: incorporation of design features to reduce cognitive demands

Use of patient‐reported outcome measures (PROMs) may increase the involvement of young people with developmental disabilities in their healthcare decisions and healthcare‐related research. Young people with developmental disabilities may have difficulty completing PROMs because of extraneous assessment demands that require additional cognitive processes. However, PROM design features may mitigate the impact of these demands. We identified and evaluated six pediatric PROMs of self‐care and domestic life tasks for the incorporation of suggested design features that can reduce cognitive demands. PROMs incorporated an average of 6 out of 11 content, 7 out of 14 layout, and 2 out of 9 administration features. This critical review identified two primary gaps in PROM design: (1) examples and visuals were not optimized to reduce cognitive demands; and (2) administration features that support young peoples motivation and self‐efficacy and reduce frustration were underutilized. Because assessment demands impact the validity of PROMs, clinicians should prospectively consider the impact of these demands when selecting PROMs and interpreting scores.

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

Abstract 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.

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

Abstract 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.

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

ABSTRACT 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.

“I just had to be flexible and show good patience”: management of interactional approaches to enact mentoring roles by peer mentors with developmental disabilities

Abstract Purpose: Peer mentoring may be an effective approach for fostering skill development for mentors and mentees with developmental disabilities. However, little is known about how mentors with developmental disabilities perceive and enact their roles. Research questions: (1) How do young adults with developmental disabilities describe their role as a peer mentor in the context of instrumental peer mentoring? (2) How do they enact their perceived roles? Methods: Thematic analysis of semi-structured reflections completed by six mentors with developmental disabilities (ages 17–35) with multiple mentoring experiences. Results: Mentors perceived themselves as professionals with a primary role of teaching, and for some mentoring relationships, a secondary role of developing an interpersonal relationship. To enact these roles, mentors used a supportive interactional approach characterized by actions such as encouragement and sharing examples and dispositions, such as flexibility and patience. Mentors monitored mentee learning and engagement within the mentoring session and, as needed, adjusted their approach to optimize mentee learning and engagement. To successfully manage their interactional approach, mentors used supports such as peer mentoring scripts, tip sheets, and supervisors. Conclusions: While mentors reported several actions for teaching, they may benefit from training to learn approaches to facilitate more consistent development of interpersonal relationships. Implications for Rehabilitation Peer mentoring may be an effective approach for fostering skill development for young adult mentors and mentees with developmental disabilities. In this study, young adult peer mentors with developmental disabilities perceived themselves as professionals with a primary role of teaching and a secondary role of developing an interpersonal relationship. Peer mentors used actions and dispositions that matched their perceived roles and supported mentees with developmental disabilities to engage in instrumental mentoring. With supports and training, young adults with developmental disabilities can successfully execute the complex relational and teaching tasks required of peer mentoring.