Caregiver Strategy Use to Promote Children's Home Participation After Pediatric Critical Illness

Jarvis, Jessica; Gurga, Andrea; Lim, Heather; Cameron, Jill I.; Gorter, Jan Willem; Choong, Karen; Khetani, Mary

doi:10.1016/j.apmr.2019.05.034

Cited by 11 publications

(9 citation statements)

References 27 publications

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“…Motivation and focus over this 4-week baseline may also have been facilitated by the biweekly check-ins from the therapist asking parents to rate their child's current performance for each goal. During this phase, parents demonstrated the ability to independently come up with solution-based environmental strategies that were effective, as found in other studies [ 46 , 47 ]. Further studies should include a larger, more socially diverse group of parents in terms of family functioning, while monitoring the specific strategies used by parents.…”

Section: Discussionsupporting

confidence: 56%

The impact of parent involvement on improving participation of children born preterm: The story in the baseline

Killeen

Anaby

2022

Contemporary Clinical Trials Communications

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Section: Discussionsupporting

confidence: 56%

The impact of parent involvement on improving participation of children born preterm: The story in the baseline

Killeen

Anaby

2022

Contemporary Clinical Trials Communications

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“…Care plans that met all four criteria by both raters were classified as complete and participation‐focused care plans. Care plans that met these criteria and additionally included an environmentally focused strategy for goal attainment were classified as exceeding criteria, as prior literature highlights that environments have significant impact on children's participation but have been less commonly addressed in rehabilitation intervention (Albrecht & Khetani, ; Anaby et al, ; Jarvis, Gurga, Lim, et al, ).…”

Section: Methodsmentioning

confidence: 99%

Caregiver creation of participation‐focused care plans using Participation and Environment Measure Plus (PEM+), an electronic health tool for family‐centred care

Bosak

Jarvis

Khetani

2019

Child

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Background Family‐centred care (FCC) is a model for rehabilitation practice that focuses on collaborative partnerships between providers and clients (i.e., children and their caregivers). FCC is a best‐practice standard and is expected to yield better outcomes for children and greater caregiver satisfaction with rehabilitation services. A commonly cited barrier to implementing FCC is perceptions about caregiver capability to contribute to designing an initial plan of care, due to lack of skill and/or interest. Objectives The aim of this study is to address FCC barriers through three objectives: (a) report the proportion of caregivers that created multiple care plans using PEM+, an electronic health tool, (b) assess the proportion of caregivers that created complete and participation‐focused care plan(s) and that exceeded criteria of a complete plan, and (c) describe characteristics of caregivers that did not create a complete care plan. Methods Study objectives were addressed via secondary analyses of a subset of data from the PEM + pilot trial. Participants were caregivers (N = 18) of children with developmental disabilities (aged 0–5 years) receiving rehabilitation services in an early childhood programme. A deductive analytic approach was used to code care plan content to criteria and to determine proportion of caregivers with a complete and participation‐focused care plan and those that exceeded the criteria. Results Multiple care plans were created by 72% of the caregivers, 83% caregivers created at least one care plan that was complete and participation‐focused per criteria, and 83% exceeded the criteria. Conclusion The high occurrence of caregivers who developed multiple care plans and who developed high‐quality care plans, in their completeness and participation‐focused features, suggests that caregivers are interested and capable of participating in a collaborative goal setting process when using PEM+. This indicates that FCC is feasible to implement in clinical workflow with the use of an electronic health tool, which may better facilitate such care. PEM+ warrants further efficacy testing prior to implementation.

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“…One potential explanation for this finding is related to the impact the home environment may have on caregivers’ dissatisfaction with their child’s participation. Prior literature has consistently found that the home environment is associated with increased participation [ 5 , 21 ], and our prior work with these data found that the majority (89%) of caregiver strategies focus on tailoring the child’s environment to promote their child’s participation at home following PICU discharge [ 19 ]. Therefore, it is possible that while the child’s participation may not change in the first 6 months post-PICU, caregivers may have adapted the home environment to make it more supportive for the child to resume participation in activities [ 29 ], thereby influencing their dissatisfaction with their child’s participation over time [ 24 ].…”

Section: Discussionmentioning

confidence: 99%

“…When characterizing caregivers’ dissatisfaction with their child’s participation, it is crucial to delineate specific child factors (e.g., a child’s functional task performance), caregiver factors (e.g., caregiver stress), and environmental factors (e.g., physical and sensory layout of the home) that influence caregiver dissatisfaction with their child’s participation in valued activities within the real-life context of the home and family [ 5 , 14 , 18 , 19 ]. Data from measures of child, caregiver, and environmental factors were included as predictors for the second study objective.…”

Section: Methodsmentioning

confidence: 99%

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

et al. 2020

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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.

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Caregiver Strategy Use to Promote Children's Home Participation After Pediatric Critical Illness

Cited by 11 publications

References 27 publications

The impact of parent involvement on improving participation of children born preterm: The story in the baseline

The impact of parent involvement on improving participation of children born preterm: The story in the baseline

Caregiver creation of participation‐focused care plans using Participation and Environment Measure Plus (PEM+), an electronic health tool for family‐centred care

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

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