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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:ObjectivesTo engage critical care end-users (survivors and caregivers) to describe their emotions and experiences across their recovery trajectory, and elicit their ideas and solutions for health service improvements to improve the ICU recovery experience.DesignEnd-user engagement as part of a qualitative design using the Framework Analysis method.SettingThe Society of Critical Care Medicine's THRIVE international collaborative sites (follow-up clinics and peer support groups).SubjectsPatients and caregivers following critical illness and identified through the collaboratives.InterventionsNone.Measurements and main resultsEighty-six interviews were conducted. The following themes were identified: 1) Emotions and experiences of patients-"Loss of former self; Experiences of disability and adaptation"; 2) Emotions and experiences of caregivers-"Emotional impacts, adopting new roles, and caregiver burden; Influence of gender roles; Adaptation, adjustment, recalibration"; and 3) Patient and caregiver-generated solutions to improve recovery across the arc of care-"Family-targeted education; Expectation management; Rehabilitation for patients and caregivers; Peer support groups; Reconnecting with ICU post-discharge; Access to community-based supports post-discharge; Psychological support; Education of issues of ICU survivorship for health professionals; Support across recovery trajectory." Themes were mapped to a previously published recovery framework (Timing It Right) that captures patient and caregiver experiences and their support needs across the phases of care from the event/diagnosis to adaptation post-discharge home.ConclusionsPatients and caregivers reported a range of emotions and experiences across the recovery trajectory from ICU to home. Through end-user engagement strategies many potential solutions were identified that could be implemented by health services and tested to support the delivery of higher-quality care for ICU survivors and their caregivers that extend from tertiary to primary care settings.

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:ImportanceThe research agenda in pediatric hospital medicine has seldom considered the perspectives of young people, parents and caregivers, and health care professionals. Their perspectives may be useful in identifying questions on topics for research.ObjectiveTo prioritize unanswered research questions in pediatric hospital medicine from the perspectives of young people, parents/caregivers, and health care professionals.Design, setting, and participantsBetween August 4, 2020, and August 19, 2021, two online surveys and a virtual workshop were conducted, using modified Delphi technique and nominal group technique. Young people, parents/caregivers, and health care professionals with experiences in pediatric hospital medicine in Canada were included.InterventionsThe established James Lind Alliance Priority Setting Partnership method was used. In phase 1, a survey collected unanswered questions regarding pediatric hospital medicine via 3 open-ended questions. Survey responses were used to develop summary questions that went through an evidence-checking process. Unanswered questions were brought to a phase 2 interim prioritization survey. The top 10 unanswered research questions in pediatric hospital medicine were established at the final priority setting workshop.Main outcomes and measuresSurvey responses, top 10 research questions.ResultsThe phase 1 survey was completed by 188 participants (148 of 167 [89%] females; 17 of 167 [10%] males; mean [SD] age, 39.5 [12.4] years) and generated 495 unanswered research questions and comments, of which 58 were deemed out of scope. The remaining 437 responses were grouped into themes (eg, communication, shared decision-making, health service delivery, and health service management) and then refined to 75 unanswered research questions. Of these 75, only 4 questions had sufficient evidence. To make the number of questions in phase 2 manageable, 21 questions submitted by only 1 respondent were eliminated. Fifty unanswered research questions were included in the phase 2 survey, which was completed by 201 participants (165 of 186 [89%] females; 19 of 186 [10%] males; mean [SD] age, 40.0 [11.0] years). A short list of 16 questions-the top 10 questions from patient partners (youths, parents/caregivers) and clinicians-was presented at the final priority setting workshop and the top 10 questions were prioritized. The top 10 questions focused on the care of special inpatient populations (eg, children with medical complexity), communication, shared decision-making, support strategies in the hospital, mental health supports, shortening length of stay, and supporting Indigenous patients, parents/caregivers, and families.Conclusions and relevanceThis patient-oriented pediatric hospital medicine priority setting partnership identified the most important unanswered research questions focused on the care of children in the hospital. These questions provide a possible roadmap for research on areas deemed important to young people, parents/caregivers, and clinicians.

Project description:IntroductionRehabilitation is considered a key intervention in health care. Clinical registries, defined as an organized system that uses observational methods to collect information to assess specific outcomes in a defined population, can contribute to assessing the impact of the rehabilitation intervention. This review aims to identify and describe rehabilitation-specific registry systems with an emphasis on identifying outcomes that enable the assessment of vital areas and activities of daily living.Evidence acquisitionA systematic scoping review was conducted. A systematic search was conducted up to August 2022 in MEDLINE/PubMed, Embase, Cochrane Library, Epistemonikos, and other search resources. Studies related to rehabilitation registries presented data on people with health problems that could limit their functioning were selected. The inclusion of studies/clinical registries was not limited by methodological design, year of publication, country, or language. The unit of analysis was rehabilitation registries. The measurement instruments used to assess the outcomes were explored to estimate the domain assessed from the vital areas related to functioning and disability as described by the International Classification of Functioning, Disability and Health (ICF). The vital areas were classified according to activities of daily living (ADLs).Evidence synthesisSeventy-one registries in rehabilitation were identified. The registries included a median of 3 (IQR 2-5) assessment instruments designed to assess the impact of different rehabilitation programs. In total, 137 different assessment scales or instruments were identified. Each rehabilitation registry assessed 6 (IQR 2-8) domains of the ICF, and 15.4% of registries assessed all domains. The most assessed domain was "Mobility" (89.7%), and the least assessed was "General Tasks and Demands" (25.6%). In addition, 92.3% of rehabilitation registries assessed basic ADLs, 76.9% advanced ADLs, and 71.8% instrumental ADLs.ConclusionsAlthough clinical registries do not claim to directly assess the impact of rehabilitation programs on people's functioning according to the ICF framework, it was identified that a low percentage of them assessed the nine vital areas through different outcome assessment instruments. However, most rehabilitation registries directly or indirectly assess some basic, instrumental, and advanced ADLs. The findings of this review highlight the need to improve the design of clinical registries focused on assessing the impact of rehabilitation programs to assess people in all areas of their lives.

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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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