School participation among young people with craniofacial microsomia and other childhood‐onset disabilities

Kaelin, Vera; Anaby, Dana; Werler, Martha M.; Khetani, Mary

doi:10.1111/dmcn.15628

Cited by 4 publications

(5 citation statements)

References 36 publications

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“…The results from the quantitative phase revealed no significant effect of the number of participation-focused caregiver strategies on the relationships between participation-related constructs (i.e., community environmental features and supports, child physical functioning, and behavioral problems) and community participation (attendance and involvement). This result partly contrasts the findings of prior research indicating that having a greater number of strategies can intensify the positive impact of environmental support on participation ( 7 ). The reasons for this discrepancy might be related to our qualitative results explaining our non-significant result, revealing setting-specific challenges that caregivers experience, their additional workload, and careful appraisal of strategy quality when trying to implement strategies in the community.…”

Section: Discussioncontrasting

confidence: 99%

“…This prioritization could potentially lead to the impact of participation-focused caregiver strategies in the school setting compared with the community setting. Alternatively, our results may indicate that caregivers temper their expectations to support participation attendance (vs. seeking to support both attendance and involvement), potentially further explaining current and prior quantitative findings about a lack of positive effect of participation-focused caregiver strategies on relationships related to involvement ( 7 ). This finding has prompted research that is underway to characterize a stepwise process for how caregivers might create strategies to support community participation.…”

Section: Discussionsupporting

confidence: 61%

“…This single-indicator latent variable was employed in a previous study that applied structural equation modeling to examine its effect on the relationships between participation-related constructs and participation attendance and involvement (7).…”

Section: Participation-focused Caregiver Strategy Constructunclassified

“…Caregivers use participation-focused strategies (e.g., offering support and guidance, planning for activities ahead of time, creating routines) when targeting predictor(s) to promote child and youth participation ( 3 – 6 ). Recent research indicates a significant positive effect of the number of participation-focused caregiver strategies on the relationship between school environmental supports and school participation attendance among children and youth with disabilities and those at risk ( 7 ). Similarly, a prior study of critically ill children revealed an effect of having participation-focused caregiver strategies on higher caregiver satisfaction with their child's home participation when combined with receiving pediatric re/habilitation services ( 8 ).…”

Section: Introductionmentioning

confidence: 99%

“…Similarly, a prior study of critically ill children revealed an effect of having participation-focused caregiver strategies on higher caregiver satisfaction with their child's home participation when combined with receiving pediatric re/habilitation services ( 8 ). Since these prior studies focused on home or school participation ( 7 , 8 ), the role that caregiver strategies play in supporting child and youth community participation is less understood. The community setting becomes increasingly important as children age and transition into adulthood ( 9 ), yet it presents more barriers and a smaller variety of strategies ( 10 , 11 ).…”

Section: Introductionmentioning

confidence: 99%

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

Kaelin,

Saluja,

Bosak

et al. 2024

Front. Pediatr.

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IntroductionThe 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.MethodsAn 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.ResultsOur 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.DiscussionThe 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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Section: Discussioncontrasting

confidence: 99%

Section: Discussionsupporting

confidence: 61%

Section: Participation-focused Caregiver Strategy Constructunclassified

Section: Introductionmentioning

confidence: 99%

Section: Introductionmentioning

confidence: 99%

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

Kaelin,

Saluja,

Bosak

et al. 2024

Front. Pediatr.

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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

Kaelin,

Boyd,

Werler

et al. 2023

J Healthc Inform Res

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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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Occupational therapy in the space of artificial intelligence: Ethical considerations and human-centered efforts

Kaelin,

Nilsson,

Lindgren

2024

Scandinavian Journal of Occupational Therapy

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School participation among young people with craniofacial microsomia and other childhood‐onset disabilities

Cited by 4 publications

References 36 publications

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

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

Natural Language Processing to Classify Caregiver Strategies Supporting Participation Among Children and Youth with Craniofacial Microsomia and Other Childhood-Onset Disabilities

Occupational therapy in the space of artificial intelligence: Ethical considerations and human-centered efforts

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