Caregiver dissatisfaction with their child's participation in home activities after pediatric critical illness

Jessica M Jarvis, Nora Fayed, Ericka L Fink, Karen Choong, Mary A Khetani, Jessica M Jarvis, Nora Fayed, Ericka L Fink, Karen Choong, Mary A Khetani

Abstract

Background: 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, 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.

Methods: Secondary 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.

Results: There 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.

Conclusions: Individualized 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 registration: ClinicalTrials.gov Identifier NCT02148081 05/28/2014.

Keywords: Caregivers; Critical care; Outcomes; Participation; Pediatrics; Rehabilitation.

Conflict of interest statement

The YC-PEM is a measure that was used in this study. YC-PEM is licensed for distribution through CanChild Centre for Childhood Disability Research. M. Khetani shares in revenue from YC-PEM sales for sponsored research and product development activities in her lab. No other authors have anything to disclose.

Figures

Fig. 1
Fig. 1
Percentage of caregivers dissatisfaction with their young child’s participation by home activity pre and post-PICU
Fig. 2
Fig. 2
Percentage of caregivers reporting dissatisfaction with their school-aged child’s participation in home activities pre and post-PICU

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Source: PubMed

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