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  • 1. Albrecht, E. C.
    et al.
    Kaelin, Vera C.
    Rehabilitation Sciences, College of Applied Health Sciences, University of Illinois at Chicago, Chicago, IL 60612, USA.
    Rigau, B. L.
    Dooling-Litfin, J. K.
    Scully, E. A.
    Murphy, N. J.
    McManus, B. M.
    Khetani, M. A.
    Pilot implementation of an electronic patient-reported outcome measure for planning and monitoring participation-focused care in early intervention2020In: BMC Medical Informatics and Decision Making, E-ISSN 1472-6947, Vol. 20, no 1, article id 199Article in journal (Refereed)
    Abstract [en]

    Background: Family-centered care is a valued approach to improving child and family outcomes in early intervention (EI), yet there is need to implement interventions that support information exchange for shared decision-making when planning and monitoring EI care. This study aims at estimating the feasibility, acceptability, and value of implementing the Young Children’s Participation and Environment Measure (YC-PEM), a valid electronic patient-reported outcome (e-PRO) that is designed to support family engagement when planning care and monitoring outcomes of care.

    Methods: Data were gathered from caregivers (N = 139) that were enrolled in a Phase 1 trial of the YC-PEM e-PRO as implemented within 1 month of their child’s next EI evaluation of progress. YC-PEM e-PRO feasibility was estimated according to enrollment and completion rates, and mean completion time. Chi-square tests were used to examine parent perceptions of YC-PEM e-PRO acceptability by caregiver education and family income. Caregiver feedback via open-ended responses were content coded to inform intervention and protocol optimizations. YC-PEM e-PRO value was estimated via composite and item-level scores to capture the extent of participation difficulty in home and community activities, and common areas of need regarding caregivers desired change in their child’s participation.

    Results: Feasibility of implementing the YC-PEM e-PRO in routine EI care was mixed, as evidenced by low enrollment rates (21.0–29.2%), a high completion rate (85.3%), and limited missing data (80.6% of completed cases contained no missing data). More than half of the participants reported that the completion of the YC-PEM e-PRO was at least somewhat helpful, regardless of family income or caregiver education, providing support for its acceptability. As for its value, the YC-PEM e-PRO results were viewed by 64% of caregivers, whose desire for change most often pertained to the child’s participation in non-discretionary activities at home and structured activities in the community.

    Conclusions: Results may support the implementation of YC-PEM e-PRO as a feasible, acceptable, and valued option for engaging families in planning the child’s EI care. Results also inform select intervention and protocol optimizations prior to undertaking a multi-site pragmatic trial of its effectiveness on family engagement and shared decision-making within an EI clinical workflow.

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  • 2. Blankvoort, Nadine
    et al.
    Kaelin, Vera C.
    Poerbodipoero, Soemitro
    Guidetti, Susanne
    Higher education students’ experiences of a short-term international programme: Exploring cultural competency and professional development2019In: Educational research (Windsor. Print), ISSN 0013-1881, E-ISSN 1469-5847, Vol. 61, no 3, p. 356-370Article in journal (Refereed)
    Abstract [en]

    Background: Globalisation trends such as increased migration to and within European countries have led to even greater cultural diversity in European societies. Cultural diversity increases the demand of cultural competency amongst professionals entering their work field. In particular, healthcare professionals need knowledge and skills to equip them to work with clients from different cultural backgrounds. Within higher education (HE), the professional development of cultural competency should ideally feature in undergraduate education and is often promoted as a by-product of a study abroad period. However, recognising that logistical and financial barriers often exist for extended study abroad, one alternative approach could be participation, at home or abroad, in a short-term international programme set within students’ own HE institutions.

    Purpose: The aim of this study was to explore HE students’ experiences of participating in international ‘short-term mobility week’ programmes at three European universities.

    Methods: Each university involved in the research offered short-term programmes for healthcare professions students at their own institution, where both local students and students from abroad could participate. Participants were healthcare students in the programme at one of the three universities. Data were collected through focus group interviews (4–8 students per group; n = 25). The data were transcribed and then analysed qualitatively, using a content comparison method.

    Results: The analysis identified six categories, which reflected students’ journeys within the short-term international experiences.

    Conclusions: The analysis suggested that, for these students, engagement in a short-term mobility week programme provided valuable opportunities for encounters with others, which contributed to personal and professional development, greater confidence in the students’ own professional identities, as well as an increasing sense of cultural awareness.

  • 3. Jarvis, Jessica M
    et al.
    Kaelin, Vera C.
    Anaby, Dana
    Teplicky, Rachel
    Khetani, Mary A.
    Electronic participation-focused care planning support for families: A pilot study2020In: Developmental Medicine & Child Neurology, ISSN 0012-1622, E-ISSN 1469-8749, Vol. 62, no 8, p. 954-961Article in journal (Refereed)
    Abstract [en]

    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.

  • 4. Kaelin, Vera C.
    et al.
    Anaby, Dana
    Werler, Martha M.
    Khetani, Mary A.
    School participation among young people with craniofacial microsomia and other childhood-onset disabilities2023In: Developmental Medicine & Child Neurology, ISSN 0012-1622, E-ISSN 1469-8749Article in journal (Refereed)
    Abstract [en]

    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.

  • 5. Kaelin, Vera C.
    et al.
    Bosak, Dianna L.
    Villegas, Vivian C.
    Imms, Christine
    Khetani, Mary A.
    Participation-focused strategy use among caregivers of children receiving early intervention2021In: American Journal of Occupational Therapy, ISSN 0272-9490, E-ISSN 1943-7676, Vol. 75, no 1, article id 7501205090Article in journal (Refereed)
    Abstract [en]

    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.

  • 6.
    Kaelin, Vera C.
    et al.
    Department of Occupational Therapy, University of Illinois Chicago, 1919 West Taylor Street, Room 316A, Chicago, IL 60612−7250, USA; Department of Computer Science, University of Illinois Chicago, 851 South Morgan Street, Room 1132, Chicago, IL 60607-7042, USA; Children’s Participation in Environment Research Lab, University of Illinois Chicago, Chicago, IL, USA.
    Boyd, Andrew D.
    Werler, Martha M.
    Parde, Natalie
    Khetani, Mary A.
    Natural language processing to classify caregiver strategies supporting participation among children and youth with craniofacial microsomia and other childhood-onset disabilities2023In: Journal of Healthcare Informatics Research, ISSN 2509-4971, E-ISSN 2509-498XArticle in journal (Refereed)
    Abstract [en]

    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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  • 7. Kaelin, Vera C.
    et al.
    Dancza, Karina
    Perceptions of occupational therapy threshold concepts by students in role-emerging placements in schools: A qualitative investigation2019In: Australian Occupational Therapy Journal, ISSN 0045-0766, E-ISSN 1440-1630, Vol. 66, p. 711-719Article in journal (Refereed)
    Abstract [en]

    Introduction: Traversing threshold concepts has been identified as crucial in becoming an occupational therapist. To support this learning, previous research has emphasised the value of students engaging in practice-based learning, accompanying reflection, and a curriculum which makes threshold concepts explicit to students. Role-emerging placements form part of students’ practice-based learning in many universities and could offer a valuable opportunity for students to learn threshold concepts. Understanding the value of threshold concepts to enhance roleemerging placement learning from both the students’ and educators’ perspectives warrants further research. The aim of this study was to examine how occupational therapy students on role-emerging placements in school settings experienced applying threshold concepts and how it impacted on their learning.

    Methods: An epistemological position of social constructionism and a qualitative research design was used. This included semi-structured focus group interviews and reflective logs that enabled exploration of 13 student’s and one supervisor’s perspectives of learning during the placement. Template analysis was used to analyse the data.

    Results: Students spoke of their learning of the threshold concepts of client-centredness, occupation, and understanding and applying occupational therapy theory in practice. These are expressed within the three emergent themes; ‘curriculum supports in placement’, ‘uncertainty when applying their own knowledge’, and ‘placement context and expectations’.

    Conclusion: Results suggest that learning happens within the liminal spaces which occurred from an intersection with the threshold concepts, the curriculum, knowledge generation and use, and the context and expectations of the role-emerging placement. Engaging with uncertainty may be considered a vital part of this process and something which should be valued.

  • 8.
    Kaelin, Vera C.
    et al.
    Ergotherapie Zentrum Rotes Kreuz Graubünden (RKG) Thusis (Schweiz).
    Gantschnig, Brigitte E
    Umeå University, Faculty of Medicine, Department of Community Medicine and Rehabilitation, Section of Occupational Therapy. Zürcher Hochschule für Angewandte Wissenschaften (ZHAW), Departement Gesundheit; Institut Ergotherapie (Schweiz).
    Teilhabe am schulischen Alltag von Kindern und Jugendlichen nacheinem Schädel-Hirn-Trauma. Wenn bei der Rückkehr plötzlich allesanders ist: [School participation among children and youth with traumatic brain injury. How everything seems to change on their return]2011In: Ergoscience, ISSN 1861-6348, E-ISSN 1861-6356, Vol. 6, no 2, p. 46-56Article in journal (Refereed)
    Abstract [en]

    Objective: Traumatic brain injury leads to impairments of body functions and structures that result in participation restrictions at school. The aim of this literature review was to outline participation restrictions at school of children and youth who have sustained a traumatic brain injury and to elaborate the potential role of Occupational Therapists at mainstream schools.

    Methods: A literature search was performed systematically in different therapeutical, medical and psychological databases. Then, literature was critically appraised and findings were summarised.

    Results: Children and youth who have sustained a traumatic brain injury have a wide range of participation restrictions. These are academic, cognitive and mobility challenges, mental stress, behavioural difficulties, environmental (social and physical) limitations and the difficulty of finding their way back into class or groups of friends.

    Conclusion: For Occupational Therapists the knowledge about these participation restrictions and possible support can serve as a basis to enable school participation of children and youth with traumatic brain injury. Furthermore, these results illuminate the importance and advantages of school-based occupational therapy.

  • 9.
    Kaelin, Vera C.
    et al.
    Rehabilitation Sciences, College of Applied Health Sciences, University of Illinois at Chicago, Chicago, IL 60612, USA; School of Health Professions, Institute of Occupational Therapy, Zurich University of Applied Sciences Switzerland, 8400 Winterthur,Switzerland.
    Ray-Kaeser, Sylvie
    Moioli, Stefania
    Stalder, Cornelia Kocher
    Santinelli, Lietta
    Echsel, Angelika
    Schulze, Christina
    Occupational therapy practice in mainstream schools: Results from an online survey in switzerland2019In: Occupational Therapy International, ISSN 0966-7903, E-ISSN 1557-0703, article id 3647397Article in journal (Refereed)
    Abstract [en]

    The shift towards inclusive education in many European countries has led to structural changes that affect both schools and their related professionals aiming to support children’s participation. While most European countries acknowledge inclusive education and its need, serious challenges exist to its implementation at a national and local community level. Interdisciplinary collaboration, including health and educational professionals, is seen as an imperative key principle for inclusive education services. To learn about the occupational therapist’s contribution to inclusive education, the aim of this study was to describe the state of the art of occupational therapists’ collaboration and services delivery in Swiss schools. Using an exploratory, cross-sectional study design, a web-based survey was sent to 509 occupational therapists in Switzerland resulting in 302 responses for data analysis using descriptive statistics. Findings show that nearly all participants (97%) collaborate with schools, and 49% of participants provided direct services within a mainstream school setting. These services were mainly funded by health insurance and focused on physical and social environmental adaptations. Despite reported collaboration between occupational therapists and schools, this study shows a need for changes in federal health and education legislation as well as innovative solutions for service delivery in schools.

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  • 10.
    Kaelin, Vera C.
    et al.
    Umeå University, Faculty of Science and Technology, Department of Computing Science. Occupational Therapy, University of Illinois Chicago, IL, Chicago, United States; Computer Science, University of Illinois Chicago, IL, Chicago, United States; Children’s Participation in Environment Research Lab, University of Illinois Chicago, IL, Chicago, United States.
    Saluja, Shivani
    Children’s Participation in Environment Research Lab, University of Illinois Chicago, IL, Chicago, United States.
    Bosak, Dianna L.
    Children’s Participation in Environment Research Lab, University of Illinois Chicago, IL, Chicago, United States.
    Anaby, Dana
    School of Physical and Occupational Therapy, McGill University, CA, Montreal, United States; CanChild Centre for Childhood Disability Research, McMaster University, CA, Hamilton, United States.
    Werler, Martha
    Epidemiology, Boston University, MA, Boston, United States.
    Khetani, Mary A.
    Occupational Therapy, University of Illinois Chicago, IL, Chicago, United States; Children’s Participation in Environment Research Lab, University of Illinois Chicago, IL, Chicago, United States; CanChild Centre for Childhood Disability Research, McMaster University, CA, Hamilton, United States.
    Caregiver strategies supporting community participation among children and youth with or at risk for disabilities: a mixed-methods study2024In: Frontiers in Pediatrics , E-ISSN 2296-2360, Vol. 12, article id 1345755Article in journal (Refereed)
    Abstract [en]

    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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  • 11. Kaelin, Vera C.
    et al.
    Valizadeh, Mina
    Salgado, Zurisadai
    Parde, Natalie
    Khetani, Mary A.
    Artificial intelligence in rehabilitation targeting the participation of children and youth with disabilities: Scoping review2021In: Journal of Medical Internet Research, E-ISSN 1438-8871, Vol. 23, no 11, article id e25745Article, review/survey (Refereed)
    Abstract [en]

    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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  • 12.
    Kaelin, Vera C.
    et al.
    Rehabilitation Sciences, University of Illinois at Chicago, Chicago, IL, United States; Children’s Participation in Environment Research Lab, University of Illinois at Chicago, Chicago, IL, United States.
    Valizadeh, Mina
    Salgado, Zurisadai
    Sim, Julia G.
    Anaby, Dana
    Boyd, Andrew D.
    Parde, Natalie
    Khetani, Mary A.
    Capturing and operationalizing participation in pediatric re/habilitation research using artificial intelligence: A scoping review2022In: Frontiers in Rehabilitation Sciences, ISSN 2673-6861, Vol. 3, article id 855240Article, review/survey (Refereed)
    Abstract [en]

    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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  • 13. Kaelin, Vera C.
    et al.
    van Hartingsveldt, Margo
    Gantschnig, Brigitte E.
    Fisher, Anne G.
    Umeå University, Faculty of Medicine, Department of Community Medicine and Rehabilitation, Section of Occupational Therapy. Department of Occupational Therapy, College of Health and Human Services, Colorado State University, Fort Collins, CO, USA.
    Are the school version of the assessment of motor and process skills measures valid for German-speaking children?2019In: Scandinavian Journal of Occupational Therapy, ISSN 1103-8128, E-ISSN 1651-2014, Vol. 26, no 2, p. 149-155Article in journal (Refereed)
    Abstract [en]

    Background: There are no validated assessment tools for evaluating quality of schoolwork task performance of children living in German-speaking Europe (GSE).

    Objective: To determine whether the international age-normative means of the School Version of the Assessment of Motor and Process Skills (School AMPS) are valid for use in GSE.

    Methods: The participants were 159 typically-developing children, 3-12 years, from GSE. We examined the proportions of School AMPS measures falling within +/- 2 standard deviation (SD) of the international age-normative means, and evaluated for significant group differences (p<0.05) in mean School AMPS measures between the GSE sample and the international age-normative sample using one-sample Z tests. When significant mean differences were found, we evaluated if the differences were clinically meaningful.

    Results: At least 95% of the GSE School AMPS measures fell within +/- 2 SD of the international age-normative means for the School AMPS. The only significant mean differences were for 6(p < 0.01) and 8-year-olds (p = 0.02), and only the 6-year-old school process mean difference was clinically meaningful.

    Conclusions: Because the only identified clinically meaningful difference was associated with likely scoring error of one rater, the international age-normative means of the School AMPS appear to be valid for use with children in GSE.

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  • 14.
    Kaelin, Vera C.
    et al.
    Children's Participation in Environment Research Lab, University of Illinois at Chicago, Chicago, Illinois, USA; Rehabilitation Sciences, University of Illinois at Chicago, Chicago, Illinois, USA.
    Villegas, Vivian
    Chen, Yi-Fan
    Murphy, Natalie
    Papautsky, Elizabeth
    Litfin, Jodi
    Leland, Natalie
    Maheshwari, Varun
    McManus, Beth
    Khetani, Mary
    Effectiveness and scalability of an electronic patient-reported outcome measure and decision support tool for family-centred and participation-focused early intervention: PROSPECT hybrid type 1 trial protocol2022In: BMJ Open, E-ISSN 2044-6055, Vol. 12, no 1, article id e051582Article in journal (Refereed)
    Abstract [en]

    Introduction: Early intervention (EI) endorses family-centred and participation-focused services, but there remain insufficient options for systematically enacting this service approach. The Young Children’s Participation and Environment Measure electronic patient-reported outcome (YC-PEM e-PRO) is an evidence-based measure for caregivers that enables family-centred services in EI. The Parent-Reported Outcomes for Strengthening Partnership within the Early Intervention Care Team (PROSPECT) is a community-based pragmatic trial examining the effectiveness of implementing the YC-PEM e-PRO measure and decision support tool as an option for use within routine EI care, on service quality and child outcomes (aim 1). Following trial completion, we will characterise stakeholder perspectives of facilitators and barriers to its implementation across multiple EI programmes (aim 2).

    Methods and analysis: This study employs a hybrid type 1 effectiveness-implementation study design. For aim 1, we aim to enrol 223 caregivers of children with or at risk for developmental disabilities or delays aged 0–3 years old that have accessed EI services for three or more months from one EI programme in the Denver Metro catchment of Colorado. Participants will be invited to enrol for 12 months, beginning at the time of their child’s annual evaluation of progress. Participants will be randomised using a cluster-randomised design at the EI service coordinator level. Both groups will complete baseline testing and follow-up assessment at 1, 6 and 12 months. A generalised linear mixed model will be fitted for each outcome of interest, with group, time and their interactions as primary fixed effects, and adjusting for child age and condition severity as secondary fixed effects. For aim 2, we will conduct focus groups with EI stakeholders (families in the intervention group, service coordinators and other service providers in the EI programme, and programme leadership) which will be analysed thematically to explain aim 1 results and identify supports and remaining barriers to its broader implementation in multiple EI programmes.

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  • 15. Kaelin, Vera C.
    et al.
    Wallace, Erin R.
    Werler, Martha M.
    Collett, Brent R.
    Khetani, Mary A.
    Community participation in youth with craniofacial microsomia2022In: Disability and Rehabilitation, ISSN 0963-8288, E-ISSN 1464-5165, Vol. 44, no 2, p. 253-260Article in journal (Refereed)
    Abstract [en]

    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.

  • 16. Kaelin, Vera C.
    et al.
    Wallace, Erin R.
    Werler, Martha M.
    Collett, Brent R.
    Rosenberg, Janine
    Khetani, Mary A.
    Caregiver perspectives on school participation among students with craniofacial microsomia2021In: American Journal of Occupational Therapy, ISSN 0272-9490, E-ISSN 1943-7676, Vol. 75, no 2, article id 7502205100Article in journal (Refereed)
    Abstract [en]

    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.

  • 17.
    Kester, Angelique Cornelia Maria
    et al.
    Senior Advisor Childhood Disability, Enablement, Liliane Foundation, Alphen aan den Rijn, Netherlands;Theme Advisor Rehabilitation and CBR, Liliane Foundation, Hertogenbosch, Netherlands.
    Kaelin, Vera C.
    Department of Rehabilitation Sciences, University of Illinois at Chicago, Chicago, IL, USA.
    Participatory capacity development: Report of a community-based training needs assessment in Vietnam2021In: World Federation of Occupational Therapists Bulletin, ISSN 1447-3828, Vol. 77, no 1, p. 40-48Article in journal (Refereed)
    Abstract [en]

    Training needs assessments can lead to participatory capacity development. However, few reports exist on this from an occupational therapy perspective. The purpose of this paper is to recount the experience and process of a training needs assessment in a mountain area of Vietnam. We visited 10 families and their children with disabilities and interviewed three local project partners to gain insight into their needs for supporting the participation of children with disabilities in daily activities. Four themes were identified through the needs assessment: 'Getting to know the context', 'The life and biggest worries of families with children with disabilities', 'Support of children with disabilities and their families', 'Wishes and needs for future training'. The outcomes revealed specific needs for improving participation and functioning in activities of daily life from different perspectives. It showed how the needs fit the concepts of occupational therapy as a client-centred profession focusing on participation in daily life.

  • 18. Khetani, Mary A.
    et al.
    McManus, Beth M.
    Albrecht, Erin C.
    Kaelin, Vera C.
    Dooling-Litfin, Jodi K.
    Scully, Elizabeth A.
    Early intervention service intensity and young children's home participation2020In: BMC Pediatrics, ISSN 1471-2431, E-ISSN 1471-2431, Vol. 20, no 1, article id 330Article in journal (Refereed)
    Abstract [en]

    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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  • 19. Rizk, Sabrin
    et al.
    Kaelin, Vera C.
    Children's Participation in Environment Research Lab, College of Applied Health Sciences, University of Illinois Chicago, Chicago, IL, United States; Program in Rehabilitation Sciences, College of Applied Health Sciences, University of Illinois Chicago, Chicago, Illinois, United States.
    Sim, Julia Gabrielle C.
    Murphy, Natalie J.
    McManus, Beth M.
    Leland, Natalie E.
    Stoffel, Ashley
    James, Lesly
    Barnekow, Kris
    Papautsky, Elizabeth Lerner
    Khetani, Mary A.
    Implementing an Electronic Patient-Reported Outcome and Decision Support Tool in Early Intervention2023In: Applied Clinical Informatics, ISSN 1869-0327, Vol. 14, no 1, p. 91-107Article in journal (Refereed)
    Abstract [en]

    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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