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

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.

Caregiver strategies supporting community participation among children and youth with or at risk for disabilities: a mixed-methods study

“…Recent research indicates a significant positive effect of the number of participation-focused caregiver strategies on the relationship between school environmental supports and school participation attendance among children and youth with disabilities and those at risk ( 7 ). Similarly, a prior study of critically ill children revealed an effect of having participation-focused caregiver strategies on higher caregiver satisfaction with their child's home participation when combined with receiving pediatric re/habilitation services ( 8 ). Since these prior studies focused on home or school participation ( 7 , 8 ), the role that caregiver strategies play in supporting child and youth community participation is less understood.…”

“…Similarly, a prior study of critically ill children revealed an effect of having participation-focused caregiver strategies on higher caregiver satisfaction with their child's home participation when combined with receiving pediatric re/habilitation services ( 8 ). Since these prior studies focused on home or school participation ( 7 , 8 ), the role that caregiver strategies play in supporting child and youth community participation is less understood. The community setting becomes increasingly important as children age and transition into adulthood ( 9 ), yet it presents more barriers and a smaller variety of strategies ( 10 , 11 ).…”

More than a feeling: understanding function and health related quality of life after pediatric neurocritical illness

“…LeBlond and colleagues [20] recently reported that among children ≤ 4 years, family functioning was significantly associated with HRQOL among TBI or orthotic injury populations 6 months after injury. Lastly, when exploring the link between functional status and functional performance or HRQOL, the environment in which the child lives may be a mediating factor and has been associated with parents' satisfaction with their child's participation in daily life activities within the home 6 months after pediatric critical illness [21,22].…”

Rehabilitation Utilization in the PICU: A Complicated Picture*

“…Another single-center pediatric study showed that implementation of an early mobility protocol decreased rates of delirium (14). A secondary analysis of a two-center prospective pediatric cohort showed that parental satisfaction in their child’s activities of daily living at home increased when the child participated in PICU early mobilization (7). Outside of these few studies, data are limited on outcomes associated with early mobilization of critically ill children.…”

“…Families prioritize functional over physiologic recovery Jessica M. LaRosa, MD 1 Sapna R. Kudchadkar, MD, PhD, FCCM [1][2][3] Rehabilitation Utilization in the PICU: A Complicated Picture* as the desired primary outcome of their child's PICU stay (6). As such, more than 50% of caregivers report dissatisfaction in their child's participation in activities of daily living after PICU hospitalization (7). Thus, actions to mitigate the negative functional sequelae of PICU survivorship are imperative.…”