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Associations of Participation-Focused Strategies and Rehabilitation Service Use With Caregiver Stress After Pediatric Critical Illness.

ABSTRACT: OBJECTIVE(S):Determine the associations between having participation-focused strategies and receiving rehabilitation services in the pediatric intensive care unit (PICU) with caregiver stress over 6 months post-PICU discharge. DESIGN:Substudy of a data from Wee-Cover, a prospective cohort study. SETTING:Two PICU sites. PARTICIPANTS:Caregivers (N=168) of children 1-17 years old admitted into a PICU for ?48 hours. MAIN OUTCOME MEASURES:Data were collected from caregivers at enrollment and 3 and 6 months post-PICU discharge. Caregiver stress was assessed using the Pediatric Inventory for Parents. Having strategies to support their child's participation in home-based activities was assessed using the Participation and Environment Measure (PEM). In PEM, caregivers report on strategies used to support their child's participation in home-based activities. Data were dichotomized (yes, no) to denote having participation-focused strategies and if their child received PICU rehabilitation services. Additional covariates were history of a preexisting condition, child age, length of PICU stay, and change in functional capacities at PICU discharge. RESULTS:History of a preexisting condition, time, and change in functional capacities significantly predicted caregiver stress frequency and difficulty. The interaction of having strategies-by-rehabilitation-by-time significantly predicted caregiver stress frequency and difficulty. CONCLUSION(S):Results highlight the role of early rehabilitation and the importance of working with caregivers to develop participation-focused strategies to support their child's functioning post-PICU. Families of children with a preexisting condition or those who experience a decrease in function during a PICU stay are susceptible to higher levels of stress and may be a priority population to target for rehabilitation services.

SUBMITTER: Jarvis JM

PROVIDER: S-EPMC6435394 | biostudies-literature | 2019 Apr

REPOSITORIES: biostudies-literature

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Associations of Participation-Focused Strategies and Rehabilitation Service Use With Caregiver Stress After Pediatric Critical Illness.

Jarvis Jessica M JM Choong Karen K Khetani Mary A MA

Archives of physical medicine and rehabilitation 20181219 4

<h4>Objective(s)</h4>Determine the associations between having participation-focused strategies and receiving rehabilitation services in the pediatric intensive care unit (PICU) with caregiver stress over 6 months post-PICU discharge.<h4>Design</h4>Substudy of a data from Wee-Cover, a prospective cohort study.<h4>Setting</h4>Two PICU sites.<h4>Participants</h4>Caregivers (N=168) of children 1-17 years old admitted into a PICU for ≥48 hours.<h4>Main outcome measures</h4>Data were collected from c ...[more]

PMID: 30578773

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Project description: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.

Project description:ObjectivesMedicare beneficiaries recovering from a critical illness are increasingly being discharged home instead of to post-acute care facilities. Rehabilitation services are commonly recommended for intensive care unit (ICU) survivors; however, little is known about the frequency and dose of home-based rehabilitation in this population.DesignRetrospective analysis of 2012 Medicare hospital and home health (HH) claims data, linked with assessment data from the Medicare Outcomes and Assessment Information Set.SettingParticipant homes.ParticipantsMedicare beneficiaries recovering from an ICU stay longer than 24 hours, who were discharged directly home with HH services within 7 days of discharge and survived without readmission or hospice transfer for at least 30 days (n = 3,176).MeasurementsCount of rehabilitation visits received during HH care episode.ResultsA total of 19,564 rehabilitation visits were delivered to ICU survivors over 118,145 person-days in HH settings, a rate of 1.16 visits per week. One-third of ICU survivors received no rehabilitation visits during HH care. In adjusted models, those with the highest baseline disability received 30% more visits (rate ratio [RR] = 1.30; 95% confidence interval [CI] = 1.17-1.45) than those with the least disability. Conversely, an inverse relationship was found between multimorbidity (Elixhauser scores) and count of rehabilitation visits received; those with the highest tertile of Elixhauser scores received 11% fewer visits (RR = .89; 95% CI = .81-.99) than those in the lowest tertile. Participants living in a rural setting (vs urban) received 6% fewer visits (RR = .94; 95% CI = .91-.98); those who lived alone received 11% fewer visits (RR = .89; 95% CI = .82-.96) than those who lived with others.ConclusionOn average, Medicare beneficiaries discharged home after a critical illness receive few rehabilitation visits in the early post-hospitalization period. Those who had more comorbidities, who lived alone, or who lived in rural settings received even fewer visits, suggesting a need for their consideration during discharge planning. J Am Geriatr Soc 68:1512-1519, 2020.

Project description:BACKGROUND:Caregiver input has informed the design of a valid electronic patient-reported outcome (PRO) measure for use in pediatric rehabilitation. This proxy assessment may be further developed to expedite and enhance patient-centered care planning processes, but user input is first needed to finalize the core requirements that will guide its design. OBJECTIVE:The objective of this study was to examine the feasibility of a stepwise process for building on a baseline assessment of young children's participation in activities to develop a care plan relevant to pediatric rehabilitation. METHODS:A cross-sectional descriptive study design was employed using qualitative methods. Data were collected via Web-based technology and by telephone. Twenty-five caregivers of young children (9 with developmental delays, 16 without delays) and between 1 and 7 years were recruited from a subsample of parents who had previously enrolled in a Web-based validation of a PRO on children's participation and provided consent for future contact. Each caregiver completed a demographic questionnaire and Young Children's Participation and Environment Measure (YC-PEM) online, followed by a 20- to 60-min semistructured and audiotaped phone interview to review and build upon PRO results as summarized in an electronic report. Interview data were content coded to the interview guide and reviewed by multiple research staff to estimate feasibility according to stepwise completion rates, perceptions of difficulty in step completion, and perceptions of overall utility. RESULTS:Half of the participants in the final study sample (N=25) fully completed a stepwise process of building on their baseline PRO assessment to develop an initial care plan for their child. In most cases, similar stepwise completion rates and trends in the approaches taken for step completion were found regardless of the child's disability status. However, more parents of children with disabilities reported difficulties in rank ordering their priorities for change and identified child-focused strategies for goal attainment. Nearly 77% (19/25) of users were willing to use the process to develop and communicate intervention priorities and strategies with professionals, family, and friends. CONCLUSIONS:Results informed revisions to the care planning guide before usability and feasibility testing of an initial Web-based prototype that is now underway.

Project description:ObjectivesTo characterize the impact of public health interventions on the volume and characteristics of admissions to the PICU.DesignMulticenter retrospective cohort study.SettingSix U.S. referral PICUs during February 15, 2020-May 14, 2020, compared with the same months during 2017-2019 (baseline).PatientsPICU admissions excluding admissions for illnesses due to severe acute respiratory syndrome coronavirus 2 and readmissions during the same hospitalization.InterventionsNone.Measurements and main resultsPrimary outcome was admission volumes during the period of stay-at-home orders (March 15, 2020-May 14, 2020) compared with baseline. Secondary outcomes were hospitalization characteristics including advanced support (e.g., invasive mechanical ventilation), PICU and hospital lengths of stay, and mortality. We used generalized linear mixed modeling to compare patient and admission characteristics during the stay-at-home orders period to baseline. We evaluated 7,960 admissions including 1,327 during March 15, 2020-May 14, 2020. Daily admissions and patients days were lower during the period of stay-at-home orders compared with baseline: median admissions 21 (interquartile range, 17-25) versus 36 (interquartile range, 30-42) (p < 0.001) and median patient days 93.0 (interquartile range, 55.9-136.7) versus 143.6 (interquartile range, 108.5-189.2) (p < 0.001). Admissions during the period of stay-at-home orders were less common in young children and for respiratory and infectious illnesses and more common for poisonings, endocrinopathies and for children with race/ethnicity categorized as other/unspecified. There were no differences in hospitalization characteristics except fewer patients received noninvasive ventilation during the period of stay-at-home orders.ConclusionsReductions in PICU admissions suggest that much of pediatric critical illness in younger children and for respiratory and infectious illnesses may be preventable through targeted public health strategies.

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Associations of Participation-Focused Strategies and Rehabilitation Service Use With Caregiver Stress After Pediatric Critical Illness.

Publications

Associations of Participation-Focused Strategies and Rehabilitation Service Use With Caregiver Stress After Pediatric Critical Illness.

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