Representation of child and youth participation within the Unified Medical Language System (UMLS).

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.

The representation of participation within the Unified Medical Language System (UMLS) is limited and poorly aligned with the contemporary definition of child and youth participation.From a contemporary paediatric rehabilitation perspective, using the current UMLS concepts for data analytics might result in misrepresentation of child and youth participation.There is need to expand ontological resources within the UMLS to fully and exclusively represent participation dimensions (attendance and involvement) in daily life activities to enable better data analytics that reflect contemporary paediatric rehabilitation practice.

Caregiver strategies supporting community participation among children and youth with or at risk for disabilities: a mixed-methods study.

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.

Medical Home Care and Educational Services for Children and Youth on the Autism Spectrum: A Scoping Review.

This scoping review examined current evidence on medical home care and its association with educational services for children and youth on the autism spectrum. We searched five databases and grey literature resulting in 328 publications. Publications meeting inclusion criteria were mapped to medical home care component(s) addressed, type(s) of educational services and their strength and type of association. The Andersen Behavioral Model of Health Services Use was used to summarize predisposing, enabling, and need factors considered. Eighteen publications were reviewed, including eight practice/policy reports and ten original research publications. Medical home care components most addressed included family-centered care (n = 10), referrals (n = 16), and effective care coordination (n = 13). Seven publications also addressed multiple educational service types. Two of the five publications that established a significant association between medical home care components and educational services had mixed results, with one publication reporting a negative association and the other publication reporting a positive association. Challenges to medical home care and educational services were most categorized as enabling factors. Results suggest three areas for further investigation: (1) limited evidence on the strength and type of association between medical home care components and educational services; (2) limited use of population data sources; and (3) the need to consider a broader range of factors when examining their association.

Diversified caregiver input to upgrade the Young Children's Participation and Environment Measure for equitable pediatric re/habilitation practice.

BACKGROUND: Practitioner and family experiences of pediatric re/habilitation can be inequitable. The Young Children's Participation and Environment Measure (YC-PEM) is an evidence-based and promising electronic patient-reported outcome measure that was designed with and for caregivers for research and practice. This study examined historically minoritized caregivers' responses to revised YC-PEM content modifications and their perspectives on core intelligent virtual agent functionality needed to improve its reach for equitable service design. METHODS: Caregivers were recruited during a routine early intervention (EI) service visit and met five inclusion criteria: (1) were 18 + years old; (2) identified as the parent or legal guardian of a child 0-3 years old enrolled in EI services for 3 + months; (3) read, wrote, and spoke English; (4) had Internet and telephone access; and (5) identified as a parent or legal guardian of a Black, non-Hispanic child or as publicly insured. Three rounds of semi-structured cognitive interviews (55-90 min each) used videoconferencing to gather caregiver feedback on their responses to select content modifications while completing YC-PEM, and their ideas for core intelligent virtual agent functionality. Interviews were transcribed verbatim, cross-checked for accuracy, and deductively and inductively content analyzed by multiple staff in three rounds. RESULTS: Eight Black, non-Hispanic caregivers from a single urban EI catchment and with diverse income levels (Mdn = $15,001-20,000) were enrolled, with children (M = 21.2 months, SD = 7.73) enrolled in EI. Caregivers proposed three ways to improve comprehension (clarify item wording, remove or simplify terms, add item examples). Environmental item edits prompted caregivers to share how they relate and respond to experiences with interpersonal and institutional discrimination impacting participation. Caregivers characterized three core functions of a virtual agent to strengthen YC-PEM navigation (read question aloud, visual and verbal prompts, more examples and/or definitions). CONCLUSIONS: Results indicate four ways that YC-PEM content will be modified to strengthen how providers screen for unmet participation needs and determinants to design pediatric re/habilitation services that are responsive to family priorities. Results also motivate the need for user-centered design of an intelligent virtual agent to strengthen user navigation, prior to undertaking a community-based pragmatic trial of its implementation for equitable practice.

Participation-Focused Strategy Use Among Caregivers of Children Receiving Early Intervention.

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 participation-related 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.

Caregiver creation of participation-focused care plans using Participation and Environment Measure Plus (PEM+), an electronic health tool for family-centred care.

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.