| 1. |
- Khetani, Mary A., et al.
(författare)
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Early intervention service intensity and young children's home participation
- 2020
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Ingår i: BMC Pediatrics. - : BioMed Central (BMC). - 1471-2431. ; 20:1
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Tidskriftsartikel (refereegranskat)abstract
- Background: Young children with developmental disabilities and delays spend significant amounts of time at home, show decreased participation in home-based activities, and receive home-based early intervention services to improve participation in activities. Yet, knowledge about the relationship between EI service use and children’s home participation in activities remains poorly understood but needed for program improvement. The purpose of this study was to understand the relationships between EI service use and children’s home participation.Methods: In a cross-sectional design, data were gathered from caregivers (N = 139) who enrolled in a pilot trial of the Young Children’s Participation in Environment Measure (YC-PEM) electronic patient-reported outcome (e-PRO), as implemented within 1 month of their child’s next EI progress evaluation. A series of path analytic models were used to estimate EI service intensity as a predictor of parent-reported young children’s home participation 1) frequency, 2) level of involvement, and 3) desired change, adjusting for family and child social and functional characteristics. Models included caregiver perceptions of home environmental support to test its indirect (i.e., mediation) effects on the relationship between EI service intensity and each of the three home participation dimensions.Results: All three models fit the data well (comparative fit index = 1.00). EI service intensity was not a significant predictor of participation frequency. However, EI service intensity had a significant direct effect on a child’s participation according to level of involvement and desired change, explaining between 13.3–33.5% of the variance in home participation. Caregiver perceptions of environmental support had a small yet significant indirect effect on the relationship between EI service intensity and level of involvement and desired change; these models explained between 18.5–38.1% of the variance in home participation.Conclusions: EI service intensity has important links with involvement in and desired change for home-based activities. Caregiver perceptions of environmental support appears to be a factor in the relationship between EI service intensity and home participation. Results warrant longitudinal replication with a control group, which would be possible with the implementation of the YC-PEM e-PRO in a routine EI clinical workflow.
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| 2. |
- Jarvis, Jessica M, et al.
(författare)
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Electronic participation-focused care planning support for families : A pilot study
- 2020
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Ingår i: Developmental Medicine & Child Neurology. - : John Wiley & Sons. - 0012-1622 .- 1469-8749. ; 62:8, s. 954-961
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Tidskriftsartikel (refereegranskat)abstract
- AIM: To evaluate the feasibility, acceptability, and preliminary effects of Participation andEnvironment 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.
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| 3. |
- Kaelin, Vera C., et al.
(författare)
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Artificial intelligence in rehabilitation targeting the participation of children and youth with disabilities : Scoping review
- 2021
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Ingår i: Journal of Medical Internet Research. - : JMIR Publications. - 1438-8871. ; 23:11
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Forskningsöversikt (refereegranskat)abstract
- Background: In the last decade, there has been a rapid increase in research on the use of artificial intelligence (AI) to improve child and youth participation in daily life activities, which is a key rehabilitation outcome. However, existing reviews place variable focus on participation, are narrow in scope, and are restricted to select diagnoses, hindering interpretability regarding the existing scope of AI applications that target the participation of children and youth in a pediatric rehabilitation setting.Objective: The aim of this scoping review is to examine how AI is integrated into pediatric rehabilitation interventions targeting the participation of children and youth with disabilities or other diagnosed health conditions in valued activities.Methods: We conducted a comprehensive literature search using established Applied Health Sciences and Computer Science databases. Two independent researchers screened and selected the studies based on a systematic procedure. Inclusion criteria were as follows: participation was an explicit study aim or outcome or the targeted focus of the AI application; AI was applied as part of the provided and tested intervention; children or youth with a disability or other diagnosed health conditions were the focus of either the study or AI application or both; and the study was published in English. Data were mapped according to the types of AI, the mode of delivery, the type of personalization, and whether the intervention addressed individual goal-setting.Results: The literature search identified 3029 documents, of which 94 met the inclusion criteria. Most of the included studies used multiple applications of AI with the highest prevalence of robotics (72/94, 77%) and human-machine interaction (51/94, 54%). Regarding mode of delivery, most of the included studies described an intervention delivered in-person (84/94, 89%), and only 11% (10/94) were delivered remotely. Most interventions were tailored to groups of individuals (93/94, 99%). Only 1% (1/94) of interventions was tailored to patients’ individually reported participation needs, and only one intervention (1/94, 1%) described individual goal-setting as part of their therapy process or intervention planning.Conclusions: There is an increasing amount of research on interventions using AI to target the participation of children and youth with disabilities or other diagnosed health conditions, supporting the potential of using AI in pediatric rehabilitation. On the basis of our results, 3 major gaps for further research and development were identified: a lack of remotely delivered participation-focused interventions using AI; a lack of individual goal-setting integrated in interventions; and a lack of interventions tailored to individually reported participation needs of children, youth, or families.
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| 4. |
- Kaelin, Vera C., et al.
(författare)
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Capturing and operationalizing participation in pediatric re/habilitation research using artificial intelligence : A scoping review
- 2022
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Ingår i: Frontiers in Rehabilitation Sciences. - : Frontiers Media S.A.. - 2673-6861. ; 3
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Forskningsöversikt (refereegranskat)abstract
- Background: There is increased interest in using artificial intelligence (AI) to provide participation-focused pediatric re/habilitation. Existing reviews on the use of AI in participation-focused pediatric re/habilitation focus on interventions and do not screen articles based on their definition of participation. AI-based assessments may help reduce provider burden and can support operationalization of the construct under investigation. To extend knowledge of the landscape on AI use in participation-focused pediatric re/habilitation, a scoping review on AI-based participation-focused assessments is needed.Objective: To understand how the construct of participation is captured and operationalized in pediatric re/habilitation using AI.Methods: We conducted a scoping review of literature published in Pubmed, PsycInfo, ERIC, CINAHL, IEEE Xplore, ACM Digital Library, ProQuest Dissertation and Theses, ACL Anthology, AAAI Digital Library, and Google Scholar. Documents were screened by 2–3 independent researchers following a systematic procedure and using the following inclusion criteria: (1) focuses on capturing participation using AI; (2) includes data on children and/or youth with a congenital or acquired disability; and (3) published in English. Data from included studies were extracted [e.g., demographics, type(s) of AI used], summarized, and sorted into categories of participation-related constructs.Results: Twenty one out of 3,406 documents were included. Included assessment approaches mainly captured participation through annotated observations (n = 20; 95%), were administered in person (n = 17; 81%), and applied machine learning (n = 20; 95%) and computer vision (n = 13; 62%). None integrated the child or youth perspective and only one included the caregiver perspective. All assessment approaches captured behavioral involvement, and none captured emotional or cognitive involvement or attendance. Additionally, 24% (n = 5) of the assessment approaches captured participation-related constructs like activity competencies and 57% (n = 12) captured aspects not included in contemporary frameworks of participation.Conclusions: Main gaps for future research include lack of: (1) research reporting on common demographic factors and including samples representing the population of children and youth with a congenital or acquired disability; (2) AI-based participation assessment approaches integrating the child or youth perspective; (3) remotely administered AI-based assessment approaches capturing both child or youth attendance and involvement; and (4) AI-based assessment approaches aligning with contemporary definitions of participation.
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| 5. |
- Kaelin, Vera C., et al.
(författare)
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Caregiver perspectives on school participation among students with craniofacial microsomia
- 2021
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Ingår i: American Journal of Occupational Therapy. - : AOTA Press. - 0272-9490 .- 1943-7676. ; 75:2
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Tidskriftsartikel (refereegranskat)abstract
- Importance: Knowledge of unmet school participation needs for students with craniofacial microsomia (CFM) can inform decisions regarding intervention support.Objective: To compare students with and without CFM on school participation (i.e., frequency, involvement, desire for participation to change) and caregivers’ perceptions of environmental support for participation in occupations.Design: Cross-sectional design using secondary analyses of a subset of data.Setting: Multisite cohort study.Participants: Caregivers of students with CFM (n = 120) and of students without CFM (n = 315), stratified by history of educationand health-related service use.Outcomes and Measures: School participation and environmental support, obtained with the Participation and Environment Measure–Children and Youth.Results: Significant group differences were found in frequency of school participation (effect size [ES] = −0.38, 95% confidence interval [−0.64, −0.12], p = .005), level of involvement (ES = −0.14, p = .029), and desired change (p = .001), with students with CFM exhibiting greater participation restriction than students without CFM and no history of service use. No statistically significant group differences were found in environmental support for participation in the school setting. Item-level findings showed statistically significant higher desire for participation to change in three of five school occupations (odds ratio = 1.77–2.39, p = .003–.045) for students with CFM compared with students without CFM and no history of service use.Conclusions and Relevance: The results suggest that students with CFM experience restriction in participation at school.What This Article Adds: Students with CFM may benefit from targeted school-based interventions to optimize their inclusion.
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| 6. |
- Kaelin, Vera C., et al.
(författare)
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Caregiver strategies supporting community participation among children and youth with or at risk for disabilities : a mixed-methods study
- 2024
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Ingår i: Frontiers in Pediatrics. - : Frontiers Media S.A.. - 2296-2360. ; 12
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Tidskriftsartikel (refereegranskat)abstract
- Introduction: The purpose of this mixed-methods study is to examine the role of caregiver strategies to support community participation among children and youth with disabilities and those at risk, from the caregiver perspective. For the quantitative phase, we tested the hypothesized positive effect of participation-focused caregiver strategies on the relationship(s) between participation-related constructs and community participation attendance and involvement. For the qualitative phase, we solicited caregiver perspectives to explain the quantitative findings.Methods: An explanatory sequential mixed-methods design (QUAN > qual) was used. For the quantitative phase, we conducted secondary analyses of data collected during a second follow-up phase of a longitudinal cohort study, including 260 families of children and youth (mean age: 13.5 years) with disabilities and those at risk [i.e., 120 families of children and youth with craniofacial microsomia (CFM); 140 families of children and youth with other types of childhood-onset disabilities]. Data were collected through the Participation and Environment Measure—Children and Youth, the Pediatric Quality of Life Inventory, and the Child Behavior Checklist and analyzed using structural equation modeling. For the qualitative phase, we conducted semi-structured interviews with eight caregivers of children and youth with disabilities and those at risk (i.e., three caregivers of children and youth with CFM; five caregivers of children and youth with other childhood-onset disabilities). Interviews were transcribed verbatim and inductively content-analyzed.Results: Our model reached acceptable to close model fit [CFI = 0.952; RMSEA = 0.068 (90% CI = 0.054–0.082); SRMR = 0.055; TLI = 0.936], revealing no significant effect of the number of participation-focused caregiver strategies on the relationships between participation-related constructs (e.g., activity competence, environment/context) and community participation in terms of attendance and involvement. The qualitative findings revealed three main categories for how caregivers explained these quantitative results: (1) caregiver workload and supports needed for implementing strategies; (2) caregivers careful strategy quality appraisal; and (3) community setting characteristics hindering successful strategy implementation.Discussion: The findings suggest that the insignificant effect of the number of caregiver strategies may be explained by the intensified need for caregiver effort and support to develop and implement quality strategies that are responsive to community setting characteristics.
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| 7. |
- Kaelin, Vera C., et al.
(författare)
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Community participation in youth with craniofacial microsomia
- 2022
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Ingår i: Disability and Rehabilitation. - : Taylor & Francis. - 0963-8288 .- 1464-5165. ; 44:2, s. 253-260
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Tidskriftsartikel (refereegranskat)abstract
- Purpose: To examine differences in community participation and environmental support for youth with and without craniofacial microsomia.Methods: This study involved secondary analyses of a subset of data (n = 396) from a longitudinal cohort study. Multiple linear and Poisson regression analyses and Wilcoxon Mann–Whitney tests were used to estimate differences in community participation and environmental support between youth with craniofacial microsomia and youth without craniofacial microsomia, stratified based on their history of education and health-related service use. Chi-square analyses were used to explore item-level group differences in change desired across community activities.Results: Statistically significant differences were found in community participation frequency (ES = −0.52; p < 0.001), level of involvement (r = −0.16; p = 0.010), and desire for change in participation when comparing youth with craniofacial microsomia and non-affected peers not receiving services (p < 0.001). There were no statistically significant differences between youth with craniofacial microsomia and non-affected peers receiving services.Conclusions: Results suggest lower community participation in youth with craniofacial microsomia as compared to non-affected peers not receiving services. This may suggest opportunities for designing and testing interventions to promote community participation among youth with craniofacial microsomia, so as to support their transition to adulthood.
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| 8. |
- Kaelin, Vera C., et al.
(författare)
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Natural language processing to classify caregiver strategies supporting participation among children and youth with craniofacial microsomia and other childhood-onset disabilities
- 2023
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Ingår i: Journal of Healthcare Informatics Research. - : Springer Nature. - 2509-4971 .- 2509-498X.
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Tidskriftsartikel (refereegranskat)abstract
- Customizing participation-focused pediatric rehabilitation interventions is an important but also complex and potentially resource intensive process, which may benefit from automated and simplified steps. This research aimed at applying natural language processing to develop and identify a best performing predictive model that classifies caregiver strategies into participation-related constructs, while filtering out non-strategies. We created a dataset including 1,576 caregiver strategies obtained from 236 families of children and youth (11–17 years) with craniofacial microsomia or other childhood-onset disabilities. These strategies were annotated to four participation-related constructs and a non-strategy class. We experimented with manually created features (i.e., speech and dependency tags, predefined likely sets of words, dense lexicon features (i.e., Unified Medical Language System (UMLS) concepts)) and three classical methods (i.e., logistic regression, naïve Bayes, support vector machines (SVM)). We tested a series of binary and multinomial classification tasks applying 10-fold cross-validation on the training set (80%) to test the best performing model on the held-out test set (20%). SVM using term frequency-inverse document frequency (TF-IDF) was the best performing model for all four classification tasks, with accuracy ranging from 78.10 to 94.92% and a macro-averaged F1-score ranging from 0.58 to 0.83. Manually created features only increased model performance when filtering out non-strategies. Results suggest pipelined classification tasks (i.e., filtering out non-strategies; classification into intrinsic and extrinsic strategies; classification into participation-related constructs) for implementation into participation-focused pediatric rehabilitation interventions like Participation and Environment Measure Plus (PEM+) among caregivers who complete the Participation and Environment Measure for Children and Youth (PEM-CY).
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| 9. |
- Kaelin, Vera C., et al.
(författare)
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Participation-focused strategy use among caregivers of children receiving early intervention
- 2021
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Ingår i: American Journal of Occupational Therapy. - : AOTA Press. - 0272-9490 .- 1943-7676. ; 75:1
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Tidskriftsartikel (refereegranskat)abstract
- Importance: Evidence on common types of participation-focused caregiver strategies can help occupational therapy practitioners to take an evidence-based approach to designing participation-focused practice.Objective: To identify and explore types of caregiver strategies to support young children’s participation in valued occupations in the home and community.Design: Qualitative study using a subset of data collected online with the Young Children’s Participation and Environment Measure (YC–PEM). Narrative responses about strategy use were content coded to the family of Participation-Related Constructs (fPRC) framework using a deductive analytic approach to identify relevant types of participation-focused strategies used in the home and community. Responses were further analyzed within each relevant fPRC construct using an inductive analytic approach to identify the scope of strategies used for each construct.Setting: Early intervention.Participants: Caregivers (N = 106) of young children receiving early intervention.Outcomes and Measures: Caregivers’ strategies to support their child’s home and community participation, provided by the YC–PEM.Results: Caregivers most commonly adapted the child’s environment or context to support their child’s home and community participation (45.06%). The least common focus of caregiver strategies was the child’s activity competencies (11.16%). Three or more types of caregiver strategies were identified for each participation-related construct.Conclusion and Relevance: Results indicated that caregivers used a range of strategies related to each of the participationrelated constructs to support their child’s participation in home and community occupations, most commonly targeting the environment. Occupational therapy practitioners can select from this range of strategies when planning participation-focused early intervention with families.What This Article Adds: This study yields new evidence on the scope of caregiver strategy use to support young children’s participation in home and community occupations. Occupational therapy practitioners can apply this evidence to anticipate common areas of caregiver strategy use in participation-focused practice with families in early intervention.
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| 10. |
- Kaelin, Vera C., et al.
(författare)
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Representation of child and youth participation within the Unified Medical Language System (UMLS)
- 2024
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Ingår i: Disability and Rehabilitation. - : Taylor & Francis. - 0963-8288 .- 1464-5165.
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Tidskriftsartikel (refereegranskat)abstract
- Purpose: To examine (1) how much participation is represented in the benchmark Unified Medical Language System (UMLS) resource, and (2) to what extent that representation reflects the definition of child and youth participation and/or its related constructs per the family of Participation-Related Constructs framework.Materials and methods: We searched and analysed UMLS concepts related to the term “participation.” Identified UMLS concepts were rated according to their representation of participation (i.e., attendance, involvement, both) as well as participation-related constructs using deductive content analysis.Results: 363 UMLS concepts were identified. Of those, 68 had at least one English definition, resulting in 81 definitions that were further analysed. Results revealed 2 definitions (2/81; 3%; 2/68 UMLS concepts) representing participation “attendance” and 18 definitions (18/81; 22%; 14/68 UMLS concepts) representing participation “involvement.” No UMLS concept definition represented both attendance and involvement (i.e., participation). Most of the definitions (11/20; 55%; 9/16 UMLS concepts) representing attendance or involvement also represent a participation-related construct.Conclusion(s): The representation of participation within the UMLS is limited and poorly aligned with the contemporary definition of child and youth participation. Expanding ontological resources to represent child and youth participation is needed to enable better data analytics that reflect contemporary paediatric rehabilitation practice.
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| 11. |
- Kaelin, Vera C., et al.
(författare)
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School participation among young people with craniofacial microsomia and other childhood-onset disabilities
- 2024
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Ingår i: Developmental Medicine & Child Neurology. - : John Wiley & Sons. - 0012-1622 .- 1469-8749. ; 66:7, s. 939-947
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Tidskriftsartikel (refereegranskat)abstract
- Aim: To examine how school environment, physical functioning problems, and behavioral problems explain levels of school participation (i.e. attendance and involvement) among young people with craniofacial microsomia (CFM) and other childhood-onset disabilities, and whether participation-focused caregiver strategies play a role in these relationships.Method: We conducted secondary analyses of a subset of data (n = 260 families: 120 with CFM and 140 with other childhood-onset disabilities) from the second follow-up phase of a longitudinal cohort study. We applied structural equation modeling with data collected from the Participation and Environment Measure – Children and Youth version, the Child Behavior Checklist, and the Pediatric Quality of Life Inventory physical functioning scale.Results: Model fit was acceptable to close (comparative fit index = 0.973; root mean square error of approximation = 0.055; standardized root mean squared residual = 0.043; Tucker–Lewis index = 0.958). School environmental support had a positive effect on young people's participation attendance and involvement, and physical functioning problems had a negative effect on participation involvement. The number of disclosed caregiver strategies had a significant positive effect on the relationship between school environmental support and school participation attendance.Interpretation: Findings confirm the effect of school environmental support and physical functioning problems on school participation and highlight the role of participation-focused caregiver strategies to intensify the positive effect of school environmental support on school participation attendance.
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| 12. |
- Rizk, Sabrin, et al.
(författare)
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Implementing an Electronic Patient-Reported Outcome and Decision Support Tool in Early Intervention
- 2023
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Ingår i: Applied Clinical Informatics. - : Georg Thieme Verlag KG. - 1869-0327. ; 14:1, s. 91-107
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Tidskriftsartikel (refereegranskat)abstract
- Objective: The aim of the study is to identify and prioritize early intervention (EI) stakeholders' perspectives of supports and barriers to implementing the Young Children's Participation and Environment Measure (YC-PEM), an electronic patient-reported outcome (e-PRO) tool, for scaling its implementation across multiple local and state EI programs.Methods: An explanatory sequential (quan > QUAL) mixed-methods study was conducted with EI families (n = 6), service coordinators (n = 9), and program leadership (n = 7). Semi-structured interviews and focus groups were used to share select quantitative pragmatic trial results (e.g., percentages for perceived helpfulness of implementation strategies) and elicit stakeholder perspectives to contextualize these results. Three study staff deductively coded transcripts to constructs in the Consolidated Framework for Implementation Research (CFIR). Data within CFIR constructs were inductively analyzed to generate themes that were rated by national early childhood advisors for their relevance to longer term implementation.Results: All three stakeholder groups (i.e., families, service coordinators, program leadership) identified thematic supports and barriers across multiple constructs within each of four CFIR domains: (1) Six themes for intervention characteristics, (2) Six themes for process, (3) three themes for inner setting, and (4) four themes for outer setting. For example, all stakeholder groups described the value of the YC-PEM e-PRO in forging connections and eliciting meaningful information about family priorities for efficient service plan development (intervention characteristics). Stakeholders prioritized reaching families with diverse linguistic preferences and user navigation needs, further tailoring its interface with automated data capture and exchange processes (process); and fostering a positive implementation climate (inner setting). Service coordinators and program leadership further articulated the value of YC-PEM e-PRO results for improving EI access (outer setting).Conclusion: Results demonstrate the YC-PEM e-PRO is an evidence-based intervention that is viable for implementation. Optimizations to its interface are needed before undertaking hybrid type-2 and 3 multisite trials to test these implementation strategies across state and local EI programs with electronic data capture capabilities and diverse levels of organizational readiness and resources for implementation.
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| 13. |
- Valizadeh, Mina, et al.
(författare)
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CareCorpus: a corpus of real-world solution-focused caregiver strategies for personalized pediatric rehabilitation service design
- 2024
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Ingår i: Proceedings of the 2024 Joint International Conference on Computational Linguistics, Language Resources and Evaluation (LREC-COLING 2024). - : ELRA Language Resource Association. - 9782493814104 ; , s. 2871-2882
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Konferensbidrag (refereegranskat)abstract
- In pediatric rehabilitation services, one intervention approach involves using solution-focused caregiver strategies to support children in their daily life activities. The manual sharing of these strategies is not scalable, warranting need for an automated approach to recognize and select relevant strategies. We introduce CareCorpus, a dataset of 780 real-world strategies written by caregivers. Strategies underwent dual-annotation by three trained annotators according to four established rehabilitation classes (i.e., environment/context, n=325 strategies; a child’s sense of self, n=151 strategies; a child’s preferences, n=104 strategies; and a child’s activity competences, n=62 strategies) and a no-strategy class (n=138 instances) for irrelevant or indeterminate instances. The average percent agreement was 80.18%, with a Cohen’s Kappa of 0.75 across all classes. To validate this dataset, we propose multi-grained classification tasks for detecting and categorizing strategies, and establish new performance benchmarks ranging from F1=0.53-0.79. Our results provide a first step towards a smart option to sort caregiver strategies for use in designing pediatric rehabilitation care plans. This novel, interdisciplinary resource and application is also anticipated to generalize to other pediatric rehabilitation service contexts that target children with developmental need.
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