Category: Pediatric Rehabilitation; Health Services Research
Objective : To determine predictors of caregivers’ desire for their child’s participation in home activities to change post-pediatric intensive care unit (PICU) discharge, and to identify most common home activities in which change is desired.
Design : Sub-study of Wee-Cover, a prospective cohort study.
Setting : Two PICUs.
Participants (or Animals, Specimens, Cadavers) : Subsample of caregivers (N=170) of children aged 1-17 years, admitted into a pediatric intensive care unit for > 48 hours, and with data on variables of interest.
Interventions : Not applicable.
Main Outcome Measure(s) : Caregivers reported if they desired their child’s participation in home activities to change using the Participation and Environment Measures (PEM) at enrollment and 3 and 6 months post-PICU discharge. A PEM composite score was used in a generalized Poisson regression to delineate predictors of change desired. PEM item scores were reported on to identify common home activities in which change is desired.
Results : Caregivers commonly reported desiring their child’s participation to change in personal care management, mealtime, getting clean, and getting rest for children 1-4 years, and personal care management, household chores, homework, and school preparation for children 5-17 years. Caregiver stress and functional capabilities at 3 and 6 months post-PICU were significantly positively associated with desiring change. Time, the interaction of having strategies and receiving PICU-based rehabilitation services, and perceptions of home environmental support were significantly negatively associated with desiring change.
Conclusions : Caregivers desire for their child’s home participation to change increases as their child’s functional capabilities increase, suggesting their expectations may vary based on their child’s capabilities. Results highlight the importance of PICU-based rehabilitation services equipping families with participation-focused strategies to ease their transition home following critical illness. When developing participation-focused strategies with caregivers, rehabilitation professionals should focus on developing strategies that increase environmental support.
Jessica Jarvis– Postdoctoral Scholar, University of Pittsburgh, Pittsburgh, Pennsylvania
Nora Fayed– Assistant Professor, Queen's University, Kingston, Ontario
Karen Choong– Professor, McMaster University, Hamilton, Ontario
Mary Khetani– Associate Professor, University of Illinois at Chicago, Chicago, Illinois