Participation Measures
A new young adult self-reported measure, modelled after the Participation and Environment Measure for Children and Youth (PEM-CY) (Coster, Law, & Beddell, 2010), is being developed and tested to capture participation outcomes of young adults with disabilities, aged 12-30. The Y-PEM (Youth and young adults Participation and Environment Measure) is a self-reported measure to evaluate participation and environmental factors across four different settings: home, school/educational setting, community and the workplace.
The Y-PEM includes mature activities pertaining to transition-aged youth and captures adult’s roles. The Y-PEM also has a new setting, i.e., workplace, with 6 newly-developed activity sets to capture work participation. In addition, a revised list of 16 items to evaluate environmental barriers and supports in the workplace was created, inspired by our recent scoping review. The content of the Y-PEM has been successfully validated with input from youth and young adults as well as through expert consultation; other psychometric properties are being examined. The final version of the Y-PEM will be available on the CanChild website soon.
Environment Factors in the Workplace
We did a scoping review to better understand environmental barriers and facilitators relevant to workplace participation for transition-aged young adults 18-35 with brain-based disabilities. Findings were categorized into the environmental domains of International Classification of Functioning, Disability, and Health (ICF). The majority of studies (77%) highlighted factors in the Services, systems and policies domain (see Table below). Facilitators included Social supports (68%), physical accessibility, and the availability of assistive technology (55%). Attitudes of colleagues and employers were mostly seen as a barrier to workplace participation (48%). View poster for more details.
Development and Testing of the Y-PEM
Researchers of the ASPIRE lab are refining and validating the Y-PEM to comprehensively capture participation of transition-aged youth and young adults with physical disabilities.
The original PEM-CY was modified to a self-reported questionnaire and content was adapted to a youth and young adult population through consecutive rounds of individual cognitive interviews with 24 participants aged 12-33 (mean=20.5; n=19 with physical disability) and consultation with experts in the field of employment (n=15).
Youth recommended mature roles specific to this age group such as dating, caring for others, preparing meals, driving, involvement in college/university student life, and work participation. Clarity and relevance were rated on a 10-point Visual Analogue Scale (VAS) by experts and young adults respectively averaged as 8.7 and 8.1 in the community, 8.3 and 8.1 in the school educational setting, and 6.9 and 7.4 in the home.
Newly developed work-related items were perceived important by experts (mean 3.4 out of 4) and young adults (3.1 out of 4) with average clarity of 8.8/10 and relevancy of 8.4/10 on the VASs. Examples include a range of activities from selecting and seeking employment to engaging in volunteering and paid positions.
Results suggest that the content of the Y-PEM is clear, relevant, and comprehensive for, and can be completed by, individuals aged 12-30. This work has been presented at the 2021 European Academy of Childhood Disability view abstract in DMCN. View full paper.
View poster and recorded presentation for more details.
How does the Y-PEM perform?
Reliability and validity of the Y-PEM
We tested the measurement properties of the Y-PEM among 113 youth and young adults aged 12-31 years old with (n=56) and without (n=57) physical disabilities. Both groups completed the Y-PEM. First, we examined whether the Y-PEM could distinguish the participation patterns and environmental supports/barriers between youth and young people with and without disabilities.
Descriptively, results showed that participants with disabilities had lower levels of frequency and involvement across all four settings: home, school/educational, community, workplace. They also had lower number of environmental supports compared to those without disabilities.
Then, we evaluated the internal consistency of the items within each setting using Cronbach alpha. Internal consistency measurements were 0.71 and above (up to 0.82) across all scales with the exception of home (0.52) and workplace frequency (0.61). Finally, to examine test-retest reliability, we asked 70 youth with and without disabilities to complete the Y-PEM a second time (2-4 weeks apart). The Intraclass Correlation Coefficient (ICC) was acceptable (>0.70) to very good (0.85) across all settings except for environmental supports at school (0.66) and workplace frequency (0.43).
View the full paper here.
How can the Y-PEM inform practice?
Through focus groups, the Y-PEM (notably the workplace section) was discussed with 11 stakeholders in the field of employment. This included clinicians, community-based employment-related service providers and a working young adult with lived experience. An inductive thematic analysis revealed three themes (see Figure below). In theme 1, stakeholders described that the Y-PEM can capture multiple factors and contexts impacting transition to employment. It generates insights linked to one’s context and sparks conversations to better understand this process. In theme 2, stakeholders highlighted that the Y-PEM responds to the need for tools to guide services of transitioning to employment. The work section of the Y-PEM can provide rich information and serve many purposes, including:
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It could be used as a goal-setting tool since it captures young people’s desire for change in work-related activities. It can also identify environmental barriers and supports to work participation.
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Young adults with disabilities can use the Environment section as a way to communicate their needs and advocate for accommodations with their employers.
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Service providers can use this section of the Y-PEM to raise awareness and educate their younger clients on the transition process to employment and potential environmental factors that could impact their participation.
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In some cases, the Y-PEM could be used to match the young person with a job that is more appropriate for them depending on their career aspirations.
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The Y-PEM could evaluate the social aspect of work which is often overlooked in practice.
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It could be beneficial to re-administer the Y-PEM after an intervention to see whether it was successful in achieving youth goals and in reducing environmental barriers.
Finally, in theme 3 stakeholders reported that the workplace participation domain provides 'a piece of the pie' in their evaluation of the young person, noting that it can be used in combination with other tools such as an interview. Overall, the Workplace Participation domain of the Y-PEM was found to be a structured and comprehensive measure that could be used to guide services of transitioning to employment among service providers from different contexts, clinical and non-clinical.
View the full paper here.
Fig. 1: This figure demonstrates the interrelated themes and the corresponding subthemes.