Development and content validity of the youth and young-adult participation and environment measure (Y-PEM)

To develop and evaluate the content of a self-reported measure of participation and environment, named Youth, Young-adult Participation and Environment Measure (Y-PEM), capturing participation at home, school, community, and the workplace among individuals with physical disabilities aged 12-30.

A multi-phase sequential design based on elements of COnsensus for Standard Measurements INstrument was employed. Five consecutive rounds of cognitive interviews with 24 participants aged 12-33 years (X̅ = 20.9; n = 19 with a physical disability) and consultation with experts (n = 15) were conducted for item development and validation. Relevancy and clarity of items in each setting were assessed using the 10-cm Visual Analogue Scales (VASs).

Participants recommended adding activities specific to this age group (i.e., dating, caregiving, preparing meals, employment). On a 4-point Likert scale, work-related items were perceived important by experts (X̅ = 3.4) and young adults (X̅ = 3.1) with average clarity of 8.8 and relevancy of 8.4 out of 10, on the VASs. Similarly, the average clarity of items across settings (home, school, community) ranged from 6.9 to 8.7 and relevancy from 7.4 to 8.1. No modifications were required in environmental items.

Results suggest that Y-PEM is clear, relevant, comprehensive, and can be completed by individuals aged 12-30 with physical disabilities.IMPLICATIONS FOR REHABILITATIONThe Y-PEM can provide a standardized and systematic method to assess the first-hand subjective experience of youth and young adults with disabilities aged 12-30 in their participation at home, school, community, and the workplace.The Y-PEM can provide information regarding participation in activities that prepare youth or young adults for the job market as well as their perspective on the environmental barriers or supports that they may face in their employment.Clinicians can use the Y-PEM to identify environmental barriers and facilitators that impact participation across different settings and address them to further promote participation in meaningful and age-related activities.