Abstract
BackgroundPediatric critical care is often accompanied by a variety of functional impairments. Preliminary evidence suggests children’s participation in home activities has a slow trajectory post-pediatric intensive care unit (PICU) discharge, however, additional and more granular knowledge on specific problematic activities is needed to inform patient-centric rehabilitative care. The objectives of this study are to identify common home activities in which caregivers’ report dissatisfaction and to determine predictors of caregivers’ dissatisfaction with their child’s participation in home activities post-PICU discharge.MethodsSecondary analyses of data from a prospective cohort study, the Wee-Cover study, using a subsample of caregivers (N = 170) of children 1–17 years, admitted to a PICU ≥48 h with data on our primary outcome measure from at least one time point. Data were gathered at enrollment and at 3 and 6 months post-PICU discharge. Caregivers reported on their dissatisfaction with their child’s participation in home activities via the Participation and Environment Measure. Common activities were identified by plotting caregiver dissatisfaction for each activity pre-and post-PICU, reporting activities in which ≥50% of caregivers reported dissatisfaction with post-PICU, and assessing for significantly different dissatisfaction levels between time-points for each activity. Predictors of caregiver dissatisfaction were assessed using Poisson generalized estimated equation models.ResultsThere was variability in reported dissatisfaction across all activities; ≥50% of caregivers reported dissatisfaction with five activities, including getting clean, personal care management, and mealtime for younger children and household chores and homework for school-aged children and youth. Four activities had significantly higher caregiver dissatisfaction post-PICU: sleep (children < 5 years), homework, indoor play and games, and computer/video games (children ≥5 years). Home environmental support and the interaction of having participation-focused strategies with receiving PICU-based rehabilitation services were negatively associated with caregiver dissatisfaction. Increased caregiver stress and functional performance were associated with increased dissatisfaction.ConclusionsIndividualized PICU-based rehabilitation services to determine family priorities and develop participation-focused strategies, specifically those increasing environmental supports within the home, may ease the family’s transition home post-PICU.Trial registrationClinicalTrials.gov Identifier NCT02148081 05/28/2014.
Highlights
Pediatric critical care is often accompanied by a variety of functional impairments
As pediatric critical care shifts its focus from mortality to survivorship, there is need to understand the outcomes that patients and caregivers deem important during recovery [6, 7]
While children who survive a critical illness experience some recovery in mobility and cognitive function in the 6-months post-pediatric intensive care unit (PICU) discharge, preliminary evidence suggests that they continue to experience difficulty in their participation in home activities
Summary
Pediatric critical care is often accompanied by a variety of functional impairments. Preliminary evidence suggests children’s participation in home activities has a slow trajectory post-pediatric intensive care unit (PICU) discharge, additional and more granular knowledge on specific problematic activities is needed to inform patient-centric rehabilitative care. There is emerging evidence that pediatric critical care survivorship is frequently accompanied by long-lasting impairments in various domains of functioning, for both children and their families [1]. These acquired impairments in physical, cognitive, social, and emotional function following critical illness are collectively referred to as post-intensive care syndrome [2]. Recovery from post-intensive care syndrome is a complex, multi-faceted process, requiring personalized support by rehabilitation services [3, 4] If not addressed, these impairments may have persistent, long-term consequences on children’s performance of daily tasks and their ability to participate in valued activities that comprise functioning and quality-of-life. The specific areas of participation that are of greatest concern to these families, and salient factors associated with caregiver concern, remain unknown
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