Our team is involved in culturally adapting and applying the PEM questionnaires in studies to examine factors related to functional outcomes for children with developmental disorders, critically ill children following a PCCU admission, and children and youth with craniofacial differences. Since the YC-PEM and PEM-CY assess for environmental impact on the child’s participation, researchers can build clinically relevant knowledge about the impact of perceived environmental barriers, relative to socio-demographic and developmental characteristics, on participation-level outcomes. This knowledge is important because there is growing research evidence to suggest that a child’s environment is a mediator of participation outcomes and may be as amenable to change as the child’s health condition.
Soon after validating the PEM-CY, we helped to build and test a model to detect a mediating effect of the child’s environment on participation, and we are now working with international colleagues to help extend these findings to new pediatric populations who may benefit from pediatric rehabilitation services such as occupational therapy. For example, we were invited to consult on a multi-site Canadian study of critically ill children during the first 6 months post-discharge from the PCCU (PI: K. Choong). The PEM-CY and YC-PEM are being administered so that the research team can examine child, family, and service characteristics that negatively influence their functional trajectories in the first six months post-discharge. As another example, the PEM-CY has also been applied in the largest NIH-funded longitudinal cohort study of children with Hemifacial Microsomia (HFM) (NIH/NIDCR R01DE011939-0, PI: Werler), the third most common craniofacial birth defect, to examine how craniofacial differences affect a child’s participation in light of known case-control differences in life quality.