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

机译：护理人员对孩子在儿科危急疾病后的参与家庭活动的不满

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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. 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. 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. 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. ClinicalTrials.gov Identifier NCT02148081 05/28/2014.
机译：儿科临界护理通常伴随着各种功能障碍。初步证据表明，儿童参与家庭活动有一个缓慢的轨迹后小儿科重症监护单位（PICU）放电，然而，需要对特定问题的活动的额外和更加粒度的知识通知患者中心的康复护理。本研究的目标是确定护理人员报告不满的共同家庭活动，并确定护理人员对儿童参与家庭活动后的家庭活动的认可。来自预期队列研究的数据的二次分析，Wee-Cover研究，使用Caregiers（n？= 170）的子样本1-17？年，达到PICU≥48？H有关我们主要结果的数据从至少一个时间点测量。数据收集在注册和3和6个月后，PICU排放后的月份。护理人员通过参与和环境措施向孩子参与家庭活动的不满。通过策划针对PICU的每个活动的护理人员不满，报告活动≥50％的护理人员通过策划了对PICU的不满，并评估了每项活动的时间点之间的显着不同的不满水平。使用Poisson广义估计的公式模型评估护理人员不满的预测因素。据报道，所有活动的不可思议都有可变性; ≥50％的护理人员报告了对五项活动的不满，包括为年轻儿童和家庭家务以及学龄儿童和青年家务和家庭作业进行清洁，个人护理管理和餐饮时间。四项活动显着高得多的照顾者不满 - PICU：睡眠（儿童<？5？年），家庭作业，室内游戏和游戏，以及电脑/视频游戏（儿童≥5？年）。家庭环境支持与接受基于PICU的康复服务的参与策略的互动与护理人员不满否定。增加的护理人员应力和功能性能与增加的不满相关。基于个人的PICU的康复服务，以确定家庭优先事项，并制定专注于参与的策略，特别是那些增加了家庭内部的环境支持，可能会让家庭过渡的家庭过渡。 ClinicalTrials.gov标识符NCT02148081 05/28/2014。

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