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=21; 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.