Is Mobility Sufficient to Understand Community Participation of Adolescents and Young Adults With Cerebral Palsy? The Mediating and Moderating Roles of Contextual Factors.

OBJECTIVE: To explore whether self-determination and family socioeconomic status (SES) mediate and/or moderate the relationship between mobility and community participation of adolescents and young adults with cerebral palsy (CP). DESIGN: Survey. SETTING: Online platform. PARTICIPANTS: Of 55 eligible adolescents/young adults with CP, 50 agreed to participate and 2 were excluded. The final convenience sample included 48 individuals (N=48), aged 15-32 years, levels I-IV of the Gross Motor Function Classification System and I-II of the Communication Function Classification System. MAIN OUTCOME MEASURES: The Temple University Community Participation Measure documented the amount, breadth, and insufficiency/sufficiency ratios of participation across 26 community settings. The ARC Self-determination Scale and the Mobility Scale of the Pediatric Evaluation of Disability Inventory-Computer Adaptive Test (PEDI-CAT) measured individuals' self-determination (ie, autonomy, psychological empowerment, self-realization) and mobility skills, respectively. The Brazilian Economic Classification Criteria-2021 assessed family SES. RESULTS: Analyses of mediating/moderating effects revealed that the influence of individuals' mobility skills on their breadth of community participation was mediated by autonomy. Family SES moderated the indirect effect of mobility on community participation breadth through autonomy. When the model was adjusted for participants' age, individuals with higher SES reported greater breadth in community participation than those from moderate and lower SES for all mobility levels. However, the magnitude of the differences among individuals of different SES levels diminished as mobility increased. CONCLUSIONS: The mobility skills of youths with CP influence their community participation through autonomy. To foster greater engagement of these individuals in the community, rehabilitation professionals should focus not only on improvement of mobility skills but also on the promotion of self-determined behaviors, especially autonomy.

Uso da mão de assistência e o desempenho bimanual no autocuidado de crianças com paralisia cerebral unilateral espástica.

OBJETIVO: Examinar a relação entre o uso da mão de assistência em atividades bimanuais e o desempenho de crianças nas atividades e tarefas de autocuidado. MÉTODO: Analisamos retrospectivamente dados da funcionalidade diária (Inventário de Avaliação Pediátrica de Incapacidade [PEDI]) e do desempenho bimanual (Avaliação da Mão de Assistência [AHA]) de 112 crianças (idade média: 8 anos 10 meses [DP 2 anos 1 mês], amplitude 3 anos 7 meses-17 anos 4 meses; 66 meninos, 46 meninas) com paralisia cerebral (PC) unilateral espástica. Nós usamos análise Rasch para examinar a relação entre os escores individuais nos itens do AHA e nos itens de autocuidado (habilidades funcionais e assistência do cuidador) do PEDI. RESULTADOS: A maioria das habilidades funcionais e das tarefas de assistência do cuidador de autocuidado ficaram localizadas no meio do contínuo unidimensional. Estes itens apresentaram níveis de dificuldade semelhantes aos itens do AHA relacionados à coordenação efetiva das duas mãos, cadência, e uso da mão de assistência para estabilizar e soltar objetos, bem como variações nos movimentos dos braços. INTERPRETAÇÃO: A distribuição dos itens de autocuidado do PEDI e itens do AHA ao longo do contínuo unidimensional ilustra a relação entre o uso da mão de assistência e o desempenho bimanual em autocuidado. Interpretação sobre a localização dos itens na hierarquia do contínuo unidimensional pode ajudar no raciocínio clínico dos terapeutas e na sugestão de objetivos de intervenção para melhorar a função manual e a funcionalidade diária de crianças com PC unilateral espástica. Tais aplicações necessitam de investigação futura.

Assisting hand use and self-care bimanual performance of children with unilateral spastic cerebral palsy.

AIM: To examine the relationship between assisting hand use in bimanual activities and children's self-care activities and task performance. METHOD: We retrospectively analysed daily functioning (Pediatric Evaluation of Disability Inventory [PEDI]) and bimanual performance (Assisting Hand Assessment [AHA]) data from the assessment of 112 children (mean age: 8 years 10 months [SD 2 years 1 month], range 3 years 7 months-17 years 4 months; 66 males, 46 females) with unilateral spastic cerebral palsy (CP). We used Rasch analysis to examine the relationship between individual item scores from the AHA and the self-care items (functional skills, caregiver assistance) from the PEDI. RESULTS: Most self-care functional skills and caregiver-assisted tasks were located on the middle of the unidimensional continuum. These items showed similar levels of difficulty as the items from the AHA related to the effective coordination of two hands, appropriate pace, and use of the assisting hand to stabilize and release objects, as well as variations in arm movements. INTERPRETATION: The distribution of the PEDI self-care and AHA items along the unidimensional continuum illustrates the relationship between assisting hand use and self-care bimanual performance. Interpretation of the items' locations on the hierarchical unidimensional continuum may be helpful to therapists' clinical reasoning and suggest intervention goals to improve the hand function and daily functioning of children with unilateral spastic CP. Such an application needs further investigation.

Determinants of Time to Care for Children and Adolescents With Disabilities.

Time use studies uncover the organization of daily routine of families of children with disabilities. The objective of this study is to identify determinants of time spent caring for children/adolescents with cerebral palsy (CP), autism spectrum disorder (ASD), and typical development (TD). Participants were caregivers of children/adolescents with/without disability. Structural equation modeling tested a proposed model of time spent in child care. The variables in the model were as follows: questionnaire (families' socioeconomic status [SES]), children's functioning (The Pediatric Evaluation of Disability Inventory-Computer Adaptive Test [PEDI-CAT]); hours of care (daily diaries), number of adaptations used, and help with child care (parents' report). Distinct variable combinations explained 78% of the variation in the time to care (TD model), followed by 42% (ASD) and 29% (CP). Adaptations indirectly affected time to care through its effect on functioning (CP); family's SES affected functioning through its effect on adaptation use (ASD). In conclusion, knowledge of factors affecting caregivers' time spent on children's care help occupational therapists implement family-centered strategies.

Children's Participation in Household Tasks: Caregiver Importance and Satisfaction.

Attribution of importance and satisfaction with performance are key dimensions contributing to engagement in occupations. This study explored caregiver satisfaction with and importance attributed to the participation of their children and adolescents in household tasks. Participants included 109 caregivers of children and adolescents of both sexes, aged 6 to 14 years, from various socioeconomic levels. They were interviewed with two questions of the Children Helping Out: Responsibilities, Expectations and Supports (CHORES), with ratings of importance and satisfaction on Likert-type scales, and asked to explain their ratings. We examined the association between the two dimensions. Results showed no correlation between caregivers' ratings of satisfaction and importance (rs = .04; p = .699). The majority of caregivers evaluated their children's participation in domestic care as very important, explaining in terms of the need for children's autonomy in adulthood. Caregivers' satisfaction was attributed to children's attitudes. The expressed ideal of children's future autonomy by caregivers is not converted to current engagement in household task.

New version of the Pediatric Evaluation of Disability Inventory (PEDI-CAT): translation, cultural adaptation to Brazil and analyses of psychometric properties

ABSTRACT Background The Pediatric Evaluation of Disability Inventory-Computer Adaptive Test (PEDI-CAT), developed with innovative measurement methodologies, evaluates functioning of children and youth, from 0 to 21 years, with different health conditions. It is a revision of an earlier instrument (PEDI) that has been used in national and international clinical practice and research. It was felt to be necessary to make this new version (PEDI-CAT) available in Brazil. Objectives Translate and culturally adapt the PEDI-CAT to the Brazilian-Portuguese language and test its psychometric properties. Method This methodological study was developed through the following stages: (1) translation, (2) synthesis, (3) back-translation, (4) revision by an expert committee, (5) testing of the pre-final version, and (6) evaluation of the psychometric properties. The 276 translated PEDI-CAT items were divided into three age groups (0-7, 8-14, and 15-21 years). Results The PEDI-CAT translation followed all six stages. The adaptations incorporated cultural and socioeconomic class specificities. The PEDI-CAT/Brazil showed good indices of inter-examiner (intraclass correlation coefficient-ICC=0.83-0.89) and test-retest (ICC=0.96-0.97) reliability, good internal consistency (0.99) and small standard error of measurement in all three age groups (0.12-0.17). Factor analyses grouped the items from the three functional skills domains into one factor, and items from the responsibility scale into three factors, supporting the adequacy of these factor solutions to the conceptual structure of the instrument and the developmental model. Conclusion The PEDI-CAT/Brazil is a theoretically consistent, culturally appropriate, and reliable instrument. Its availability in Brazil will contribute to the evaluation and measurement of functional outcomes from clinical interventions, longitudinal follow-up, and rehabilitation research.

New version of the Pediatric Evaluation of Disability Inventory (PEDI-CAT): translation, cultural adaptation to Brazil and analyses of psychometric properties.

BACKGROUND: The Pediatric Evaluation of Disability Inventory-Computer Adaptive Test (PEDI-CAT), developed with innovative measurement methodologies, evaluates functioning of children and youth, from 0 to 21 years, with different health conditions. It is a revision of an earlier instrument (PEDI) that has been used in national and international clinical practice and research. It was felt to be necessary to make this new version (PEDI-CAT) available in Brazil. OBJECTIVES: Translate and culturally adapt the PEDI-CAT to the Brazilian-Portuguese language and test its psychometric properties. METHOD: This methodological study was developed through the following stages: (1) translation, (2) synthesis, (3) back-translation, (4) revision by an expert committee, (5) testing of the pre-final version, and (6) evaluation of the psychometric properties. The 276 translated PEDI-CAT items were divided into three age groups (0-7, 8-14, and 15-21 years). RESULTS: The PEDI-CAT translation followed all six stages. The adaptations incorporated cultural and socioeconomic class specificities. The PEDI-CAT/Brazil showed good indices of inter-examiner (intraclass correlation coefficient-ICC=0.83-0.89) and test-retest (ICC=0.96-0.97) reliability, good internal consistency (0.99) and small standard error of measurement in all three age groups (0.12-0.17). Factor analyses grouped the items from the three functional skills domains into one factor, and items from the responsibility scale into three factors, supporting the adequacy of these factor solutions to the conceptual structure of the instrument and the developmental model. CONCLUSION: The PEDI-CAT/Brazil is a theoretically consistent, culturally appropriate, and reliable instrument. Its availability in Brazil will contribute to the evaluation and measurement of functional outcomes from clinical interventions, longitudinal follow-up, and rehabilitation research.

Development of a first-contact protocol to guide assessment of adult patients in rehabilitation services networks

Objective: This paper describes the development of the Protocol for Identification of Problems for Rehabilitation (PLPR), a tool to standardize collection of functional information based on the International Classification of Functioning, Disability and Health (ICF). Development of the protocol: The PLPR was developed for use during the initial contact with adult patients within a public network of rehabilitation services. Steps to develop the protocol included: survey of the ICF codes most used by clinical professionals; compilation of data from functional instruments; development and pilot testing of a preliminary version in the service settings; discussion with professionals and development of the final version. The final version includes: user identification; social and health information; brief functional description (BFD); summary of the BFD; and PLPR results. Further testing of the final version will be conducted. Conclusions: The protocol standardizes the first contact between the user and the rehabilitation service. Systematic use of the protocol could also help to create a functional database that would allow comparisons between rehabilitation services and countries over time.

Development of a first-contact protocol to guide assessment of adult patients in rehabilitation services networks.

OBJECTIVE: This paper describes the development of the Protocol for Identification of Problems for Rehabilitation (PLPR), a tool to standardize collection of functional information based on the International Classification of Functioning, Disability and Health (ICF). DEVELOPMENT OF THE PROTOCOL: The PLPR was developed for use during the initial contact with adult patients within a public network of rehabilitation services. Steps to develop the protocol included: survey of the ICF codes most used by clinical professionals; compilation of data from functional instruments; development and pilot testing of a preliminary version in the service settings; discussion with professionals and development of the final version. The final version includes: user identification; social and health information; brief functional description (BFD); summary of the BFD; and PLPR results. Further testing of the final version will be conducted. CONCLUSIONS: The protocol standardizes the first contact between the user and the rehabilitation service. Systematic use of the protocol could also help to create a functional database that would allow comparisons between rehabilitation services and countries over time.

Predictive Factors of Household Task Participation in Brazilian Children and Adolescents.

Home environment is an important setting for child participation. This study investigated the participation of Brazilian children and adolescents in household self-care (SC) and family-care (FC) tasks. Interviews were conducted with 109 caregivers of children and adolescents ages 6 to 14 years residing in Belo Horizonte (Brazil). Multiple regression models revealed that a greater number of FC tasks were performed by children and adolescents (R2 = .23) from families who did not have a housekeeper and those in which the mothers did not work outside of the home; children and adolescents from this subgroup also received less assistance from the caregivers (R2 = .21) and showed greater independence in task performance (R2 = .20). On average, Brazilian children and adolescents participate in about half of the SC and 25% the FC household tasks. Factors related to family structure and child's age were associated with task performance, caregiver assistance, and child and adolescent independence in household tasks.

Functional predictors of school participation by children with disabilities.

This study examined the functional requirements that significantly predicted participation of US elementary school children with a variety of disabling conditions (N = 266), in seven different school settings: Transportation, Transitions, Regular classroom, Special classroom, Mealtime, Bathroom, and Playground. Performance on a number of setting-relevant tasks was expected to be predictive of meaningful participation in each school environment. Stepwise multiple regression analyses were conducted to identify the order of importance of the relevant variables as well as the smaller set of functional tasks that best predicted children's participation in each setting. The results revealed that successful participation in the different elementary school settings was strongly associated with performance of both physical and cognitive/behavioural activities. Furthermore, each setting had a unique set of predictors, suggesting that some aspects of function are context-specific. Findings from this study may inform therapists about the most relevant areas of function that support social and physical participation of children with disabilities who are included in regular schools.