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1.
BMJ Open ; 14(2): e076537, 2024 Feb 20.
Article in English | MEDLINE | ID: mdl-38382949

ABSTRACT

OBJECTIVE: To review patient-report/caregiver-report measures of rehabilitation service use following acquired brain injury (ABI). DATA SOURCES: Medline, APA PsycINFO, Embase and CINAHL were searched on November 2021 and November 2022. Authors were contacted if measures were not included in manuscripts/appendices. STUDY SELECTION: Included articles were empirical research or a research protocol, available in English and described measures of patient report/caregiver report of rehabilitation service use post-ABI via quantitative or qualitative methods. Two reviewers independently screened 5290 records using DistillerSR. Discrepancies were resolved by team adjudication. DATA EXTRACTION: Data extraction was piloted with high levels of agreement (k=.94). Data were extracted by a single member with team meetings to seek guidance as needed. Data included administration characteristics (reporter, mode of administration, recall period), psychometric evidence and dimensions assessed (types of services, setting, frequency, duration, intensity, qualitative aspects). DATA SYNTHESIS: One hundred and fifty-two measures were identified from 85 quantitative, 56 qualitative and 3 psychometric studies. Psychometric properties were reported for four measures, all of which focused on satisfaction. Most measures inquired about the type of rehabilitation services used, with more than half assessing functional (eg, physical therapy) and behavioural health rehabilitation services, but fewer than half assessing community and academic reintegration (eg, special education, vocational rehabilitation) or cognitive (eg, neuropsychology) services. Fewer than half assessed qualitative aspects (eg, satisfaction). Recall periods ranged from 1 month to 'since the ABI event' or focused on current use. Of measures that could be accessed (n=71), many included a limited checklist of types of services used. Very few measures assessed setting, frequency, intensity or duration. CONCLUSIONS: Despite widespread interest, the vast majority of measures have not been validated and are limited in scope. Use of gold-standard psychometric methods to develop and validate a comprehensive patient-report/caregiver-report measure of rehabilitation service use would have wide-ranging implications for improving rehabilitation research in ABI.


Subject(s)
Brain Injuries , Psychiatry , Humans , Caregivers , Brain Injuries/rehabilitation , Rehabilitation, Vocational , Checklist
2.
Exp Neurol ; 369: 114544, 2023 Nov.
Article in English | MEDLINE | ID: mdl-37726048

ABSTRACT

Traumatic brain injury (TBI) causes neurobehavioral and cognitive impairments that negatively impact life quality for millions of individuals. Because of its pernicious effects, numerous pharmacological interventions have been evaluated to attenuate the TBI-induced deficits or to reinstate function. While many such pharmacotherapies have conferred benefits in the laboratory, successful translation to the clinic has yet to be achieved. Given the individual, medical, and societal burden of TBI, there is an urgent need for alternative approaches to attenuate TBI sequelae and promote recovery. Music based interventions (MBIs) may hold untapped potential for improving neurobehavioral and cognitive recovery after TBI as data in normal, non-TBI, rats show plasticity and augmented cognition. Hence, the aim of this study was to test the hypothesis that providing a MBI to adult rats after TBI would improve cognition, neurobehavior, and histological endpoints. Adult male rats received a moderate-to-severe controlled cortical impact injury (2.8 mm impact at 4 m/s) or sham surgery (n = 10-12 per group) and 24 h later were randomized to classical Music or No Music (i.e., ambient room noise) for 3 h/day from 19:00 to 22:00 h for 30 days (last day of behavior). Motor (beam-walk), cognitive (acquisition of spatial learning and memory), anxiety-like behavior (open field), coping (shock probe defensive burying), as well as histopathology (lesion volume), neuroplasticity (BDNF), and neuroinflammation (Iba1, and CD163) were assessed. The data showed that the MBI improved motor, cognitive, and anxiety-like behavior vs. No Music (p's < 0.05). Music also reduced cortical lesion volume and activated microglia but increased resting microglia and hippocampal BDNF expression. These findings support the hypothesis and provide a compelling impetus for additional preclinical studies utilizing MBIs as a potential efficacious rehabilitative therapy for TBI.

4.
Pediatr Clin North Am ; 70(3): 399-413, 2023 06.
Article in English | MEDLINE | ID: mdl-37121633

ABSTRACT

Over two-thirds of pediatric critical illness survivors will experience functional impairments that persist after discharge, that is, post-intensive care syndrome in pediatrics (PICS-p). Risk factors include child and family characteristics, invasive procedures, and social determinants of health. Approaches to remediate PICS-p include early rehabilitation, minimizing sedation, psychosocial resources for caregivers, delivery of family-centered care, and longitudinal screening for PICS-p. Challenges include feasible and validated approaches to screening, and resources and coordination for multidisciplinary care. Next steps should include resources to identify and address adverse social determinants of health and examination of treatment efficacy and implementation equity.


Subject(s)
Critical Illness , Patient Discharge , Child , Humans , Critical Illness/therapy
5.
J Child Health Care ; : 13674935231154829, 2023 Feb 07.
Article in English | MEDLINE | ID: mdl-36749657

ABSTRACT

Critical illness resulting in a pediatric intensive care unit (PICU) admission is a profoundly stressful experience for a child and their family. Increasing evidence for emotional and behavioral sequelae post-PICU emphasizes a need to provide better support for families throughout this period of care and recovery. The aim of this qualitative investigation was to identify salient and modifiable aspects of a critical care experience that can be addressed to better support families of critically ill children. Individual semi-structured interviews were conducted with 26 caregivers of children who survived a PICU admission. Interviews were audio-recorded and transcribed verbatim; themes were identified via thematic analysis. Caregivers were enrolled using convenience sampling from seven tertiary care PICUs in the Eunice Kennedy Shriver National Institute of Child Health and Human Development Collaborative Pediatric Critical Care Research Network. Themes from caregiver interviews were identified within two overarching categories containing three themes each. Advice for future PICU families: (1) Be intentional about caring for your own well-being, (2) speak up, ask questions, and challenge decisions you're not comfortable with, and (3) continue to engage with your child. Characteristics of a satisfactory PICU experience: (1) A caregiver-provider relationship of mutual trust established through clear communication and respectful collaboration, (2) hospital environments that provide physical and social supports to maintain humanity in healthcare, and (3) preparing families for care transitions. Targeted, interdisciplinary approaches to partner with families during critical care may improve their PICU experience and contribute to improved long-term outcomes for PICU survivors.

6.
Resuscitation ; 182: 109634, 2023 01.
Article in English | MEDLINE | ID: mdl-36336196

ABSTRACT

AIM: To analyze whether brain connectivity sequences including diffusion tensor imaging (DTI) and resting state functional magnetic resonance imaging (rsfMRI) identify vulnerable brain regions and networks associated with neurologic outcome after pediatric cardiac arrest. METHODS: Children aged 2 d-17 y with cardiac arrest were enrolled in one of 2 parent studies at a single center. Clinically indicated brain MRI with DTI and rsfMRI and performed within 2 weeks after arrest were analyzed. Tract-wise fractional anisotropy (FA) and axial, radial, and mean diffusivity assessed DTI, and functional connectivity strength (FCS) assessed rsfMRI between outcome groups. Unfavorable neurologic outcome was defined as Pediatric Cerebral Performance Category score 4-6 or change > 1 between 6 months after arrest vs baseline. RESULTS: Among children with DTI (n = 28), 57% had unfavorable outcome. Mean, radial, axial diffusivity and FA of varying direction of magnitude in the limbic tracts, including the right cingulum parolfactory, left cingulum parahippocampal, corpus callosum forceps major, and corpus callosum forceps minor tracts, were associated with unfavorable neurologic outcome (p < 0.05). Among children with rsfMRI (n = 12), 67% had unfavorable outcome. Decreased FCS in the ventromedial and dorsolateral prefrontal cortex, insula, precentral gyrus, anterior cingulate, and inferior parietal lobule were correlated regionally with unfavorable neurologic outcome (p < 0.05 Family-Wise Error corrected). CONCLUSION: Decreased multimodal connectivity measures of paralimbic tracts were associated with unfavorable neurologic outcome after pediatric cardiac arrest. Longitudinal analysis correlating brain connectivity sequences with long term neuropsychological outcomes to identify the impact of pediatric cardiac arrest in vulnerable brain networks over time appears warranted.


Subject(s)
Diffusion Tensor Imaging , White Matter , Humans , Child , Diffusion Tensor Imaging/methods , Brain/pathology , Magnetic Resonance Imaging , Diffusion Magnetic Resonance Imaging
7.
Pediatr Crit Care Med ; 23(11): 893-907, 2022 11 01.
Article in English | MEDLINE | ID: mdl-36040097

ABSTRACT

OBJECTIVES: To identify a PICU Core Outcome Measurement Set (PICU COMS), a set of measures that can be used to evaluate the PICU Core Outcome Set (PICU COS) domains in PICU patients and their families. DESIGN: A modified Delphi consensus process. SETTING: Four webinars attended by PICU physicians and nurses, pediatric surgeons, rehabilitation physicians, and scientists with expertise in PICU clinical care or research ( n = 35). Attendees were from eight countries and convened from the Pediatric Acute Lung Injury and Sepsis Investigators Pediatric Outcomes STudies after PICU Investigators and the Eunice Kennedy Shriver National Institute of Child Health and Human Development Collaborative Pediatric Critical Care Research Network PICU COS Investigators. SUBJECTS: Measures to assess outcome domains of the PICU COS are as follows: cognitive, emotional, overall (including health-related quality of life), physical, and family health. Measures evaluating social health were also considered. INTERVENTIONS: None. MEASUREMENTS AND MAIN RESULTS: Measures were classified as general or additional based on generalizability across PICU populations, feasibility, and relevance to specific COS domains. Measures with high consensus, defined as 80% agreement for inclusion, were selected for the PICU COMS. Among 140 candidate measures, 24 were delineated as general (broadly applicable) and, of these, 10 achieved consensus for inclusion in the COMS (7 patient-oriented and 3 family-oriented). Six of the seven patient measures were applicable to the broadest range of patients, diagnoses, and developmental abilities. All were validated in pediatric populations and have normative pediatric data. Twenty additional measures focusing on specific populations or in-depth evaluation of a COS subdomain also met consensus for inclusion as COMS additional measures. CONCLUSIONS: The PICU COMS delineates measures to evaluate domains in the PICU COS and facilitates comparability across future research studies to characterize PICU survivorship and enable interventional studies to target long-term outcomes after critical illness.


Subject(s)
Critical Care , Quality of Life , Child , Humans , Outcome Assessment, Health Care , Consensus , Critical Illness , Delphi Technique
9.
BMJ Open Respir Res ; 8(1)2021 07.
Article in English | MEDLINE | ID: mdl-34326154

ABSTRACT

BACKGROUND: Both pathogenic bacteria and viruses are frequently detected in the nasopharynx (NP) of children in the absence of acute respiratory infection (ARI) symptoms. The aim of this study was to estimate the aetiological fractions for ARI hospitalisation in children for respiratory syncytial virus (RSV) and influenza virus and to determine whether detection of specific respiratory pathogens on NP samples was associated with ARI hospitalisation. METHODS: 349 children up to 5 years of age hospitalised for ARI (following a symptom-based case definition) and 306 hospital controls were prospectively enrolled in 16 centres across seven European Union countries between 2016 and 2019. Admission day NP swabs were analysed by multiplex PCR for 25 targets. RESULTS: RSV was the leading single cause of ARI hospitalisations, with an overall population attributable fraction (PAF) of 33.4% and high seasonality as well as preponderance in younger children. Detection of RSV on NP swabs was strongly associated with ARI hospitalisation (OR adjusted for age and season: 20.6, 95% CI: 9.4 to 45.3). Detection of three other viral pathogens showed strong associations with ARI hospitalisation: influenza viruses had an adjusted OR of 6.1 (95% CI: 2.5 to 14.9), parainfluenza viruses (PIVs) an adjusted OR of 4.6 (95% CI: 1.8 to 11.3) and metapneumoviruses an adjusted OR of 4.5 (95% CI: 1.3 to 16.1). Influenza viruses had a PAF of 7.9%, PIVs of 6.5% and metapneumoviruses of 3.0%. In contrast, most other pathogens were found in similar proportions in cases and controls, including Streptococcus pneumoniae, which was weakly associated with case status, and endemic coronaviruses. CONCLUSION: RSV is the predominant cause of ARI hospitalisations in young children in Europe and its detection, as well as detection of influenza virus, PIV or metapneumovirus, on NP swabs can establish aetiology with high probability. PAFs for RSV and influenza virus are highly seasonal and age dependent.


Subject(s)
Respiratory Syncytial Virus Infections , Respiratory Syncytial Virus, Human , Respiratory Tract Infections , Case-Control Studies , Child, Preschool , Hospitalization , Humans , Respiratory Syncytial Virus Infections/diagnosis , Respiratory Syncytial Virus Infections/epidemiology , Respiratory Tract Infections/epidemiology
10.
Neurocrit Care ; 35(2): 457-467, 2021 10.
Article in English | MEDLINE | ID: mdl-33665769

ABSTRACT

BACKGROUND/OBJECTIVE: Pediatric neurocritical care survivorship is frequently accompanied by functional impairments. Lack of prognostic biomarkers is a barrier to early identification and management of impairment. We explored the association between blood biomarkers and functional impairment in children with acute acquired brain injury. METHODS: This study is a secondary analysis of a randomized control trial evaluating early versus usual care rehabilitation in the pediatric intensive care unit (PICU). Forty-four children (17 [39%] female, median age 11 [interquartile range 6-13] years) with acute acquired brain injury admitted to the PICU were studied. A single center obtained serum samples on admission days 0, 1, 3, 5, and the day closest to hospital discharge. Biomarkers relevant to brain injury (neuron specific enolase [NSE], S100b), inflammation (interleukin [IL-6], C-reactive protein), and regeneration (brain-derived neurotrophic factor [BDNF], vascular endothelial growth factor [VEGF]) were collected. Biomarkers were analyzed using a Luminex® bioassay. Functional status scale (FSS) scores were abstracted from the medical record. New functional impairment was defined as a (worse) FSS score at hospital discharge compared to pre-PICU (baseline). Individual biomarker fluorescence index (FI) values for each sample collection day were correlated with new functional impairment using Spearman rank correlation coefficient (ρ). Trends in repeated measures of biomarker FI over time were explored graphically, and the association between repeated measures of biomarker FI and new functional impairment was analyzed using covariate adjusted linear mixed-effect models. RESULTS: Functional impairment was inversely correlated with markers of regeneration and plasticity including BDNF at day 3 (ρ = - 0.404, p = .015), day 5 (ρ = - 0.549, p = 0.005) and hospital discharge (ρ = - 0.420, p = 0.026) and VEGF at day 1 (ρ = - 0.282, p = 0.008) and hospital discharge (ρ = - 0.378, p = 0.047), such that lower levels of both markers at each time point were associated with greater impairment. Similarly, repeated measures of BDNF and VEGF were inversely correlated with new functional impairment (B = - 0.001, p = 0.001 and B = - 0.001, p = 0.003, respectively). NSE, a biomarker of acute brain injury, showed a positive correlation between day 0 levels and new functional impairment (ρ = 0.320, p = 0.044). CONCLUSIONS: Blood-based biomarkers of regeneration and plasticity may hold prognostic utility for functional impairment among pediatric patients with neurocritical illness and warrant further investigation.


Subject(s)
Phosphopyruvate Hydratase , Vascular Endothelial Growth Factor A , Adolescent , Biomarkers , Child , Female , Humans , Regeneration , S100 Calcium Binding Protein beta Subunit
11.
BMC Pediatr ; 20(1): 415, 2020 09 02.
Article in English | MEDLINE | ID: mdl-32878614

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.


Subject(s)
Caregivers , Critical Illness , Activities of Daily Living , Adolescent , Child , Humans , Intensive Care Units, Pediatric , Prospective Studies
13.
Dev Med Child Neurol ; 62(8): 954-961, 2020 08.
Article in English | MEDLINE | ID: mdl-32259292

ABSTRACT

AIM: To evaluate the feasibility, acceptability, and preliminary effects of Participation and Environment Measure-Plus (PEM+) 2.0, an optimized version of a web-based, participation-focused, care-planning tool. METHOD: Twenty-two caregivers of children aged 0 to 5 years receiving rehabilitation services, who reported dissatisfaction with their child's participation, had internet access, and could read and write English, were recruited for this 2-week, single-arm pilot trial. Feasibility was assessed through retention rates, completion time, percentage of care plans developed relative to caregiver reported need, and independent completion of PEM+ 2.0. Acceptability was assessed by the Usefulness, Satisfaction, and Ease of Use Questionnaire. Preliminary effects were assessed by two items on caregiver reported impact of PEM+ 2.0 on confidence for addressing their child's participation. RESULTS: Eighteen caregivers completed at least one iteration of PEM+ 2.0; of those, 17 were female and 15 were 30 to 39 years old. The median completion time was 12.99 minutes (quartile 1, 6.30; quartile 3, 17.33), mean care plan creation relative to need was 50% (standard deviation [SD] 31), and 17 completed PEM+ 2.0 independently. Mean acceptability scores were 3.80 to 4.97 (SD 1.25-1.97) and mean preliminary effect scores were 4.61 to 4.72 (SD 1.85-2.24), out of 7.0. There were strong and significant positive associations between two of the three estimates of PEM+ 2.0 acceptability and caregiver confidence (r=0.577-0.793, p<0.01). INTERPRETATION: Electronic health tools have the potential for facilitating family-centered care in pediatric rehabilitation. PEM+ 2.0 is a feasible tool within pediatric rehabilitation and has potential to be an acceptable tool for improving caregiver confidence for promoting their child's participation in valued activities. WHAT THIS PAPER ADDS: Participation and Environment Measure-Plus (PEM+) 2.0 is feasible for collaboratively engaging caregivers in the care-planning process. Caregivers perceived PEM+ 2.0 as helpful for thinking about their child's participation and what can be done to improve it. Feasibility and acceptability results will inform PEM+ 2.0 optimizations.


Subject(s)
Caregivers , Patient Care Planning , Patient Participation , Rehabilitation/methods , Telemedicine/methods , Adult , Child, Preschool , Family , Female , Humans , Infant , Infant, Newborn , Male , Middle Aged , Outcome and Process Assessment, Health Care , Pilot Projects , Young Adult
14.
Contemp Clin Trials ; 91: 105968, 2020 04.
Article in English | MEDLINE | ID: mdl-32147572

ABSTRACT

BACKGROUND: Pediatric Intensive Care Unit (PICU) teams provide care for critically ill children with diverse and often complex medical and surgical conditions. Researchers often lack guidance on an approach to select the best outcomes when evaluating this critically ill population. Studies would be enhanced by incorporating multi-stakeholder preferences to better evaluate clinical care. This manuscript outlines the methodology currently being used to develop a PICU Core Outcome Set (COS). This PICU COS utilizes mixed methods, an inclusive stakeholder approach, and a modified Delphi consensus process that will serve as a resource for PICU research programs. METHODS: A Scoping Review of the PICU literature evaluating outcomes after pediatric critical illness, a qualitative study interviewing PICU survivors and their parents, and other relevant literature will serve to inform a modified, international Delphi consensus process. The Delphi process will derive a set of minimum domains for evaluation of outcomes of critically ill children and their families. Delphi respondents include researchers, multidisciplinary clinicians, families and former patients, research funding agencies, payors, and advocates. Consensus meetings will refine and finalize the domains of the COS, outline a battery instruments for use in future studies, and prepare for extensive dissemination for broad implementation. DISCUSSION: The PICU COS will be a guideline resource for investigators to assure that outcomes most important to all stakeholders are considered in PICU clinical research in addition to those deemed most important to individual scientists. TRIAL REGISTRATION: COMET database (http://www.comet-initiative.org/, Record ID 1131, 01/01/18).


Subject(s)
Critical Illness/therapy , Intensive Care Units, Pediatric/organization & administration , Outcome Assessment, Health Care/organization & administration , Adolescent , Child , Child, Preschool , Delphi Technique , Endpoint Determination , Female , Guidelines as Topic , Humans , Infant , Intensive Care Units, Pediatric/standards , Male , Research Design , Stakeholder Participation
16.
Child Care Health Dev ; 45(6): 791-798, 2019 11.
Article in English | MEDLINE | ID: mdl-31313843

ABSTRACT

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.


Subject(s)
Caregivers , Child Health Services , Delivery of Health Care, Integrated/organization & administration , Developmental Disabilities/therapy , Electronic Health Records/organization & administration , Patient-Centered Care , Professional-Family Relations , Adult , Child, Preschool , Developmental Disabilities/rehabilitation , Female , Health Literacy , Humans , Infant , Infant, Newborn , Male , Pilot Projects
17.
Am J Occup Ther ; 73(4): 7304205130p1-7304205130p8, 2019.
Article in English | MEDLINE | ID: mdl-31318677

ABSTRACT

IMPORTANCE: The Participation and Environment Measure Plus (PEM+) is a new electronic health application to help caregivers contribute to client-centered and participation-focused care planning for their young child. The PEM+ is designed to help caregivers build on their participation assessment by determining priority activities, setting specific goals, and identifying strategies for goal attainment. OBJECTIVE: To examine the usability of the PEM+. DESIGN: A single-arm usability trial. SETTING: Two early intervention and early childhood educational programs. PARTICIPANTS: Six caregivers of children ages 0-3 yr with developmental delay and receiving rehabilitation services. INTERVENTION: Caregivers who were eligible and enrolled were given access to the PEM+ for 1 wk and instructed to complete one iteration. OUTCOMES AND MEASURES: Usability was assessed according to caregivers' report of PEM+'s technical effectiveness and ease of use, ease of learning, and user satisfaction via the Usefulness, Satisfaction, and Ease of Use questionnaire. RESULTS: All caregivers completed the PEM+ online once and in its entirety (mean completion time = 13.6 min). Mean technical effectiveness ratings ranged from 5.7 to 6.3 out of 7.0, and mean ease of use, ease of learning, and user satisfaction ratings were 4.4, 5.4, and 4.2 out of 6.0, respectively. CONCLUSIONS AND RELEVANCE: Caregivers of young children can navigate the PEM+. Trends in survey feedback informed optimizations for the PEM+ before further feasibility testing. WHAT THIS ARTICLE ADDS: This study provides preliminary evidence for a promising tool that can help to customize the way practitioners partner with families to create a plan for occupational therapy services.


Subject(s)
Caregivers , Developmental Disabilities , Child , Child, Preschool , Humans , Infant, Newborn , Learning , Surveys and Questionnaires
18.
Arch Phys Med Rehabil ; 100(11): 2144-2150, 2019 11.
Article in English | MEDLINE | ID: mdl-31278925

ABSTRACT

OBJECTIVES: The primary objectives are to assess the most common type of caregiver strategy (remedial vs compensatory) reported for supporting their child's home participation after critical illness and identify themes in compensatory strategies described, with a secondary objective to describe themes in strategy use as reported by caregivers of children who did and did not receive pediatric intensive care unit (PICU) rehabilitation services. DESIGN: Qualitative substudy of the Wee-Cover prospective cohort study. SETTING: Two PICU sites. PARTICIPANTS: Wee-Cover enrolled caregivers (N=180) of children 1-17 years of age, who were admitted to a PICU for ≥48 hours. This study excluded participants missing relevant data (n=12). INTERVENTION: Not applicable. MAIN OUTCOME MEASURES: Qualitative data were gathered from open-ended questions on strategies within the Participation and Environment Measure at PICU discharge and 3 and 6 months post-PICU discharge. Strategies were classified as remedial or compensatory pending their content fit with 1 of 5 environmental chapters in the International Classification of Functioning, Disability, and Health-Children and Youth Version. Data on PICU-based rehabilitation services were obtained prospectively from electronic medical records and dichotomized (yes or no). RESULTS: Most caregiver strategies were compensatory, with more than half (60%) of the strategies pertaining to fostering supportive relationships. In contrast, strategies addressing the child's natural environment (12%), services (3%), and attitudes of others in the home (1%) were least commonly described. Similar themes were identified for caregivers whose children did and did not receive PICU rehabilitation services. CONCLUSIONS: Caregivers identify a range of strategies to facilitate their child's participation in home activities post-PICU discharge, but primarily report on strategies for addressing supports and relationships in the child's home environment. Results highlight areas warranting caregiver education to support the child's participation after critical illness.


Subject(s)
Caregivers/psychology , Critical Illness/rehabilitation , Family/psychology , Intensive Care Units, Pediatric/organization & administration , Physical Therapy Modalities , Activities of Daily Living , Adolescent , Child , Child, Preschool , Environment , Female , Humans , Infant , Interpersonal Relations , Male , Prospective Studies , Qualitative Research , Severity of Illness Index , Social Participation
19.
Disabil Rehabil ; 41(13): 1491-1498, 2019 06.
Article in English | MEDLINE | ID: mdl-29378460

ABSTRACT

OBJECTIVE: To determine if positive emotion modifies the relationship between cognitive impairment and activities of daily living disability status over 10 years in Mexican American adults aged 75 years and older. METHODS: A retrospective cohort design using data from the Hispanic established populations for the epidemiologic studies of the elderly. About 2674 participants aged 75 years and older were included and followed over 10 years. Cognition was measured using the mini-mental state examination, positive emotion was measured using four questions from the Center for Epidemiologic Studies Depression Scale, and disability was measured using seven activities of daily living items. A series of generalized estimating equations models were used, with the initial analysis including those with disability at baseline and subsequent analyses excluding disability at baseline. RESULTS: Positive emotion and cognitive impairment consistently decreased and increased risk for activities of daily living disability, respectively. Positive emotion was a significant modifier in the cross-sectional analysis, and was not a statistically significant modifier in the longitudinal or predictive series analysis. CONCLUSIONS: Positive emotion and cognitive impairment differentially affect the risk of developing activities of daily living disability. Further research is needed to explore the interaction of positive emotion and cognitive impairment, and to identify appropriate interventions that address the specific cognitive and emotional needs of older Mexican Americans. Implications for rehabilitation Promoting emotional well-being may be protective against incident disability for older adults. Cognitive impairment significantly predicts incident disability in activities of daily living and should be considered an early indicator of impending disability for older adults.


Subject(s)
Activities of Daily Living/psychology , Cognitive Dysfunction , Disabled Persons , Emotions , Aged , Aged, 80 and over , Cognitive Dysfunction/psychology , Cognitive Dysfunction/rehabilitation , Cohort Studies , Cross-Sectional Studies , Disabled Persons/psychology , Disabled Persons/rehabilitation , Female , Humans , Male , Mexican Americans/psychology , Mexican Americans/statistics & numerical data , Psychology, Positive , Retrospective Studies , United States
20.
Pediatr Infect Dis J ; 38(5): e82-e86, 2019 05.
Article in English | MEDLINE | ID: mdl-30256315

ABSTRACT

BACKGROUND: Infectious disease (ID) pandemics pose a considerable global threat and can disproportionately affect vulnerable populations including children. Pediatric clinical research in pandemics is essential to improve children's healthcare and minimize risks of harm by interventions that lack an adequate evidence base for this population. The unique features of ID pandemics require consideration of special processes to facilitate clinical research. We aimed to obtain consensus on pediatric clinician-researchers' perceptions of the priorities to feasibly conduct clinical pediatric pandemic research in Europe. METHODS: Mixed method study in 2 stages, recruiting pediatric clinician-researchers with experience of conducting pediatric ID research in clinical settings in Europe. Stage 1 was an expert stakeholder workshop and interviews. Discussions focused on participant's experience of conducting pediatric ID research and processes to facilitate pandemic research. Information informed stage 2, an online consensus survey to identify pediatric inician-researchers priorities to enable ID pandemic research. RESULTS: Twenty-three pediatric clinician-researchers attended the workshop and 39 completed the survey. Priorities were primarily focused on structural and operational requirements of research design and regulation: (1) clarity within the European Clinical Trials Directive for pediatric pandemic research; (2) simplified regulatory processes for research involving clinical samples and data; and (3) improved relationships between regulatory bodies and researchers. CONCLUSIONS: Results suggest that changes need to be made to the current regulatory environment to facilitate and improve pediatric research in the pandemic context. These findings can provide expert evidence to research policy decision-makers and regulators and to develop a strategy to lobby for change.


Subject(s)
Biomedical Research/organization & administration , Communicable Disease Control/methods , Communicable Diseases/epidemiology , Disease Management , Disease Transmission, Infectious/prevention & control , Pandemics , Research , Communicable Diseases/diagnosis , Communicable Diseases/therapy , Communicable Diseases/transmission , Europe/epidemiology , Humans
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