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1.
Disabil Rehabil ; : 1-9, 2024 Jan 19.
Artigo em Inglês | MEDLINE | ID: mdl-38240172

RESUMO

PURPOSE: This study describes the development of four age-based item code sets from WHO's International classification of functioning disability and health, children and youth version (ICF-CY). Given the continuing goal of universal implementation of the ICF-CY, a reduced set of codes was identified from more than 1600 codes to facilitate the use of the classification for clinical, research and policy applications of the ICF-CY. METHODS: The ICF-CY developmental code sets were developed by consensus using the Delphi method. A multi-disciplinary group of international experts representing 27 countries from 5 WHO world regions completed a series of iterative online surveys to rate categories of child functioning essential for inclusion in the respective age-based code set. RESULTS: Four age-based code sets covering 37, 52, 60 and 57 codes across four domains of the ICF-CY were successfully derived with a high level of participant consensus. The code sets align with developmental theory and represent essential indicators of functioning defining key stages of child development. CONCLUSION: The ICF-CY developmental code sets offer a common, universal language of childhood functioning and disability with global application for multidisciplinary research, clinical practice and policy.


Broad umbrella terms, such as children with disabilities, neurodiversity and neurodevelopmental disabilities are widely used in the literature but not defined in a consistent, universal language.Codes from the International Classification of Functioning, Disability and Health-Children and Youth Version (ICF-CY) offer a universal language of health and functioning.ICF-CY item codes were developed by consensus for four age groups of children, providing a universal language of disability for:epidemiological studies of disability prevalencescreening and assessment toolsdocumenting intervention goals and outcomes.

2.
Artigo em Inglês | MEDLINE | ID: mdl-33669588

RESUMO

In the early years of life, children's interactions with the physical and social environment- including families, schools and communities-play a defining role in developmental trajectories with long-term implications for their health, well-being and earning potential as they become adults. Importantly, failing to reach their developmental potential contributes to global cycles of poverty, inequality, and social exclusion. Guided by a rights-based approach, this narrative review synthesizes selected studies and global initiatives promoting early child development and proposes a universal intervention framework of child-environment interactions to optimize children's developmental functioning and trajectories.


Assuntos
Desenvolvimento Infantil , Pobreza , Adulto , Criança , Pré-Escolar , Escolaridade , Família , Humanos , Instituições Acadêmicas
3.
Artigo em Inglês | MEDLINE | ID: mdl-32846919

RESUMO

To assess activity and participation for children in Taiwan's Disability Eligibility Determination System (DEDS), we developed a questionnaire, the Functioning Disability Evaluation Scale (FUNDES-Child), based on the Child and Adolescent Scale of Participation (CASP). The study follows a methodology research design to investigate the construct validity of the frequency and independence dimensions of FUNDES-Child 7.0. Two samples were randomly stratified from the databank of 13,835 children and youth with disabilities aged 6.0-17.9 years to examine structural validity by exploratory factor analysis (EFA, n = 4111, mean age of 11.3 ± 3.5) and confirmatory factor analysis (CFA, n = 4823, mean age of 11.4 ± 3.5)). EFA indicated a 4-factor structure for the frequency dimension (51.3% variance explained) and a 2-factor structure for the independence dimension (53.6% variance explained). The CFA indicated that the second-order factor structures of both dimensions were more parsimonious with adequate fit indices (Goodness fit Index, GFI; Normed Fit Index, NFI; Comparative Fit Index, CFI; and Tucker-Lewis Index, TLI ≥ 0.95, Root Mean Square Error of Approximation, RMSEA < 0.06). Results provide evidence that the participation part of FUNDES-Child 7.0 has acceptable structural validity for use in Taiwan's DEDS. Utility of FUNDES-Child 7.0 in rehabilitation, welfare, and educational services needs further study.


Assuntos
Avaliação da Deficiência , Pessoas com Deficiência , Definição da Elegibilidade , Adolescente , Criança , Feminino , Humanos , Masculino , Psicometria , Reprodutibilidade dos Testes , Inquéritos e Questionários , Taiwan
4.
J Autism Dev Disord ; 50(8): 2987-3004, 2020 Aug.
Artigo em Inglês | MEDLINE | ID: mdl-32056114

RESUMO

Self-injurious behavior (SIB) occurs in up to 50% of individuals with autism. As one of the most serious conditions in individuals with developmental disabilities, SIB affects the individual and his or her family in multiple contexts. A systematic analysis of factors most commonly associated with SIB could inform the development of individualized intervention strategies. The current study examined factors related to SIB in an analysis of client records of 145 children with autism in a comprehensive care center. Predictor variables included age, gender, the Adaptive Behavior Composite, sensory processing, aggression, stereotypies, irritability, adaptive skills, and medical conditions. Age, irritability, and the Adaptive Behavior Composite were found to significantly predict SIB.


Assuntos
Transtorno do Espectro Autista/complicações , Comportamento Autodestrutivo/etiologia , Adolescente , Agressão , Transtorno Autístico/complicações , Criança , Feminino , Humanos , Humor Irritável , Masculino , Tratamento Domiciliar , Transtorno de Movimento Estereotipado
5.
Disabil Rehabil ; 39(25): 2584-2593, 2017 Dec.
Artigo em Inglês | MEDLINE | ID: mdl-27758149

RESUMO

BACKGROUND: The National Institute on Disability, Independent Living, and Rehabilitation Research (NIDILRR) Burn Injury Model Systems (BMS) is a nationwide database that uses patient-reported outcome measures to collect data. Though the outcome measures demonstrate good psychometric properties, the question remains whether or not these measures collect data that encompass the entire experience of burn patients over time. METHODS: Each meaningful concept included in the BMS assessments was linked to the International Classification of Functioning, Disability and Health (ICF) in order to classify and describe the content of each measure. The linking was completed by two experienced coders. The perspective of each assessment was also determined. RESULTS: The body function component was most frequently addressed overall followed by the activities and participation component. The component body structures and environmental factors are not extensively covered in the BMS assessments. ICF chapter and category distribution varied greatly between assessments. The assessments were of the health status perspective. CONCLUSION: This study suggests a need to revisit the item composition of the BMS assessments to more evenly distribute ICF topics and subtopics that are pertinent to burn injury which will ensure a broader but more precise understanding of burn injury recovery. Implications for Rehabilitation A better understanding of the data collected through the Burn Model Systems (BMS) project may contribute to improve data collection tools and ultimately lead to clinical practice innovations and improvements. Clinicians interested in using BMS data for research purposes can better understand what topics are included and excluded in the collection and what perspectives are addressed. This study highlights the need for burn clinicians around the world to lend their expertise to the WHO for the development of a much needed burn injury International Classification of Functioning, Disability and Health Core Set.


Assuntos
Queimaduras/reabilitação , Avaliação de Resultados em Cuidados de Saúde/métodos , Atividades Cotidianas , Adulto , Coleta de Dados/métodos , Bases de Dados Factuais , Avaliação da Deficiência , Pessoas com Deficiência/reabilitação , Feminino , Nível de Saúde , Humanos , Vida Independente , Classificação Internacional de Funcionalidade, Incapacidade e Saúde/estatística & dados numéricos , Masculino , Psicometria/métodos , Pesquisa de Reabilitação
6.
Burns ; 42(7): 1396-1403, 2016 Nov.
Artigo em Inglês | MEDLINE | ID: mdl-27524436

RESUMO

OBJECTIVE: To link, classify and describe the content of the Multicenter Benchmarking Study Burn Outcomes Questionnaires (BOQ) using the International Classification of Functioning, Disability and Health (ICF) to determine if the information garnered provides researchers with the data necessary to develop a comprehensive understanding of life after burns. METHODS: Two ICF linking experts used a standardized linking technique endorsed by the World Health Organization to link all BOQ concepts to the ICF. Linking results were analyzed to determine the comprehensiveness of each of the five measures. RESULTS: The activities and participation component was most frequently addressed followed by the body functions component. Environmental factors are not extensively covered and body structures are not addressed. ICF chapter and category distribution were skewed and varied between assessments. The majority of BOQ items are of the health status perspective. CONCLUSION: BOQ item composition could be improved with a more even distribution of pertinent ICF topics. Assessment authors may consider addressing the impact of environmental factors on participation. Including body structure concepts would allow investigators to track structural deformation and/or developmental delay. Generally speaking, this data should not be used to examine quality of life outcomes.


Assuntos
Benchmarking , Queimaduras/terapia , Avaliação de Resultados em Cuidados de Saúde , Atividades Cotidianas , Avaliação da Deficiência , Nível de Saúde , Humanos , Classificação Internacional de Funcionalidade, Incapacidade e Saúde , Relações Interpessoais , Limitação da Mobilidade , Qualidade de Vida , Reprodutibilidade dos Testes , Participação Social , Inquéritos e Questionários
7.
Disabil Rehabil ; 38(19): 1909-17, 2016 09.
Artigo em Inglês | MEDLINE | ID: mdl-26750736

RESUMO

PURPOSE: Two studies are presented that evaluated the Communication Supports Inventory-Children & Youth (CSI-CY), an instrument designed to facilitate the development of communication-related educational goals for students with complex communication needs (CCN). The CSI-CY incorporates a code set based on the ICF-CY. The studies were designed to determine the effect of using the CSI-CY on IEP goals for students with CCN and to evaluate consumer satisfaction. METHOD: In Study 1, sixty-one educators and speech-language pathologists were randomly assigned to either (a) provide a student's current IEP (control group) or (b) complete the CSI-CY prior to preparing a student's next IEP and to submit the new IEP (experimental group). Study 2 was a field test to generate consumer satisfaction data. RESULTS: Study 1 showed that IEP goals submitted by participants in the experimental group referenced CSI-CY-related content significantly more frequently than did those submitted by control participants. Study 2 revealed high satisfaction with the instrument. CONCLUSIONS: The code set basis of the CSI-CY extends the common language of the ICF-CY to practical educational use for children with CCN across diagnostic groups. The CSI-CY is well regarded as an instrument to inform the content of communication goals related to CCN. Implications for Rehabilitation The CSI-CY will guide rehabilitation professionals to develop goals for children with complex communication impairments. The CSI-CY is a new instrument that is based on the ICF-CY for documentation of communication goals.


Assuntos
Transtornos da Comunicação/diagnóstico , Transtornos da Comunicação/reabilitação , Comunicação , Pessoas com Deficiência/reabilitação , Adolescente , Criança , Feminino , Humanos , Classificação Internacional de Funcionalidade, Incapacidade e Saúde/organização & administração , Masculino , Oregon , Índice de Gravidade de Doença , Patologia da Fala e Linguagem , Organização Mundial da Saúde
8.
Disabil Rehabil ; 38(24): 2374-82, 2016 12.
Artigo em Inglês | MEDLINE | ID: mdl-26752264

RESUMO

PURPOSE: The study aimed to investigate comprehensively the determinants of the quality of life (QOL) of caregivers of children with cerebral palsy (CP) based on the International Classification of Functioning, Disability and Health for Children and Youth (ICF-CY). METHODS: A total of 167 children with CP (mean age 9.06 years, SD 2.61 years) and their caregivers (mean age 40.24 years, SD 5.43 years) participated in this study. The QOL of caregivers was measured with the World Health Organization Quality of Life-BREF-Taiwan version (WHOQOL-BREF-TW). The potential determinants of QOL were collected, including child characteristics, caregiver characteristics, and environmental factors from all dimensions of the ICF-CY and analysed using multiple regression models. RESULTS: Four multiple regression models revealed that determinants of the QOL of caregivers of children with CP was multidimensional, encompassing child characteristics (age, type of CP, fine motor impairment, other diseases, behaviour and emotions, visual impairment, hearing impairment), caregiver characteristics (general mental health, parenting stress, marital status, family coping patterns, and socio-economic status), and environmental factors (child's medication, school setting, and current rehabilitation service, caregiver's spouse's age, family life impacts, and domestic helper). CONCLUSIONS: Knowledge of the determinants of QOL could serve as a guide in a holistic approach to evaluation and intervention and help plan interventions targeted at these determinants to improve the QOL of caregivers of children with CP. Implications for Rehabilitation Caregivers of children with CP had lower QOL, except the environment QOL. The QOL determinants of caregivers of children with CP are multidimensional, including child characteristics, caregiver characteristics, and environmental factors. In addition to child characteristics of severity of fine motor impairments and emotional and behavioural problems, caregiver characteristics of general mental health, parenting stress, and coping patterns, and environmental factors of family life impacts, and school setting demonstrated important relationships with caregiver QOL.


Assuntos
Cuidadores/psicologia , Paralisia Cerebral/reabilitação , Qualidade de Vida , Adaptação Psicológica , Adulto , Paralisia Cerebral/complicações , Criança , Crianças com Deficiência , Meio Ambiente , Humanos , Pessoa de Meia-Idade , Análise de Regressão
9.
PLoS One ; 10(5): e0126693, 2015.
Artigo em Inglês | MEDLINE | ID: mdl-25962175

RESUMO

BACKGROUND: Independence and frequency are two distinct dimensions of participation in daily life. The gap between independence and frequency may reflect the role of the environment on participation, but this distinction has not been fully explored. METHODS: A total of 18,119 parents or primary caregivers of children with disabilities aged 6.0-17.9 years were interviewed in a cross-sectional nationwide survey with the Functioning Scale of the Disability Evaluation System - Child version (FUNDES-Child). A section consisting of 20 items measured the children's daily participation in 4 environmental settings: home, neighborhood/community, school, and home/community. Higher independence and frequency restriction scores indicated greater limitation of participation in daily activities. Scores for independence, frequency and independence-frequency gaps were examined across ages along with trend analysis. ANOVA was used to compare the gaps across settings and diagnoses for children with mild levels of severity of impairment. FINDINGS: A negative independence-frequency gap (restriction of frequency was greater than that of independence) was found for children with mild to severe levels of impairment. A positive gap (restriction of independence was greater than that of frequency) was found for children with profound levels of severity. The gaps became wider with age in most settings of children with mild impairment and different diagnoses. Widest negative gaps were found for the neighborhood/community settings than for the other three settings for children with mild to severe impairment. CONCLUSIONS: Children's participation and independence-frequency gaps depend not only on the severity of their impairments or diagnoses, but also on their age, the setting and the support provided by their environment. In Taiwan, more frequency restrictions than ability restrictions were found for children with mild to moderate severity, especially in the neighborhood/community setting, and increased with age. Further identification of environmental opportunities that positively impact frequency of participation is needed.


Assuntos
Crianças com Deficiência/estatística & dados numéricos , Adolescente , Cuidadores , Criança , Estudos Transversais , Avaliação da Deficiência , Feminino , Humanos , Masculino , Sistema de Registros , Inquéritos e Questionários , Taiwan
10.
Disabil Rehabil ; 37(12): 1044-54, 2015.
Artigo em Inglês | MEDLINE | ID: mdl-25144828

RESUMO

PURPOSE: Comprehensive description of functioning is important in providing early intervention services for infants with developmental delay/disabilities (DD). A code set of the International Classification of Functioning, Disability and Health: Children and Youth Version (ICF-CY) could facilitate the practical use of the ICF-CY in team evaluation. The purpose of this study was to derive an ICF-CY code set for infants under three years of age with early delay and disabilities (EDD Code Set) for initial team evaluation. METHODS: The EDD Code Set based on the ICF-CY was developed on the basis of a Delphi survey of international professionals experienced in implementing the ICF-CY and professionals in early intervention service system in Taiwan. RESULTS: Twenty-five professionals completed the Delphi survey. A total of 82 ICF-CY second-level categories were identified for the EDD Code Set, including 28 categories from the domain Activities and Participation, 29 from body functions, 10 from body structures and 15 from environmental factors. CONCLUSIONS: The EDD Code Set of 82 ICF-CY categories could be useful in multidisciplinary team evaluations to describe functioning of infants younger than three years of age with DD, in a holistic manner. Future validation of the EDD Code Set and examination of its clinical utility are needed. IMPLICATIONS FOR REHABILITATION: The EDD Code Set with 82 essential ICF-CY categories could be useful in the initial team evaluation as a common language to describe functioning of infants less than three years of age with developmental delay/disabilities, with a more holistic view. The EDD Code Set including essential categories in activities and participation, body functions, body structures and environmental factors could be used to create a functional profile for each infant with special needs and to clarify the interaction of child and environment accounting for the child's functioning.


Assuntos
Pessoal Técnico de Saúde/estatística & dados numéricos , Codificação Clínica/estatística & dados numéricos , Deficiências do Desenvolvimento/classificação , Crianças com Deficiência/classificação , Classificação Internacional de Funcionalidade, Incapacidade e Saúde/normas , Adulto , Idoso , Pré-Escolar , Intervenção Educacional Precoce , Feminino , Humanos , Lactente , Recém-Nascido , Masculino , Pessoa de Meia-Idade , Inquéritos e Questionários , Taiwan
11.
Arch Phys Med Rehabil ; 96(2): 307-16, 2015 Feb.
Artigo em Inglês | MEDLINE | ID: mdl-25449189

RESUMO

OBJECTIVE: To evaluate the psychometric properties of the newly developed Young Children's Participation and Environment Measure (YC-PEM). DESIGN: Cross-sectional study. SETTING: Data were collected online and by telephone. PARTICIPANTS: Convenience and snowball sampling methods were used to survey caregivers of children (N=395, comprising children with [n=93] and without [n=302] developmental disabilities and delays) between the ages of 0 and 5 years (mean age±SD, 35.33±20.29 mo) and residing in North America. INTERVENTIONS: Not applicable. MAIN OUTCOME MEASURES: The YC-PEM includes 3 participation scales and 1 environment scale. Each scale is assessed across 3 settings: home, daycare/preschool, and community. Data were analyzed to derive estimates of internal consistency, test-retest reliability, and construct validity. RESULTS: Internal consistency ranged from .68 to .96 and .92 to .96 for the participation and environment scales, respectively. Test-retest reliability (2-4 wk) ranged from .31 to .93 for participation scales and from .91 to .94 for the environment scale. One of 3 participation scales and the environment scale demonstrated significant group differences by disability status across all 3 settings, and all 4 scales discriminated between disability groups for the daycare/preschool setting. The participation scales exhibited small to moderate positive associations with functional performance scores. CONCLUSIONS: Results lend initial support for the use of the YC-PEM in research to assess the participation of young children with disabilities and delays in terms of (1) home, daycare/preschool, and community participation patterns; (2) perceived environmental supports and barriers to participation; and (3) activity-specific parent strategies to promote participation.


Assuntos
Deficiências do Desenvolvimento , Meio Ambiente , Participação Social , Inquéritos e Questionários , Atividades Cotidianas , Creches/organização & administração , Pré-Escolar , Estudos Transversais , Deficiências do Desenvolvimento/psicologia , Equipamentos e Provisões , Arquitetura de Instituições de Saúde , Pai , Feminino , Inquéritos Epidemiológicos , Humanos , Lactente , Aprendizagem , Masculino , Mães , Jogos e Brinquedos , Políticas , Psicometria , Reprodutibilidade dos Testes , Escolas Maternais/organização & administração
12.
Res Dev Disabil ; 38: 64-74, 2015 Mar.
Artigo em Inglês | MEDLINE | ID: mdl-25546296

RESUMO

Measurement of children's participation and environmental factors is a key component of the assessment in the new Disability Evaluation System (DES) in Taiwan. The Child and Adolescent Scale of Environment (CASE) was translated into Traditional Chinese (CASE-C) and used for assessing environmental factors affecting the participation of children and youth with disabilities in the DES. The aim of this study was to validate the CASE-C. Participants were 614 children and youth aged 6.0-17.9 years with disabilities, with the largest condition group comprised of children with intellectual disability (61%). Internal structure, internal consistency, test-retest reliability, convergent validity, and discriminant (known group) validity were examined using exploratory factor analyses, Cronbach's α coefficient, intra-class correlation coefficients (ICC), correlation analyses, and univariate ANOVAs. A three-factor structure (Family/Community Resources, Assistance/Attitude Supports, and Physical Design Access) of the CASE-C was produced with 38% variance explained. The CASE-C had adequate internal consistency (Cronbach's α=.74-.86) and test-retest reliability (ICCs=.73-.90). Children and youth with disabilities who had higher levels of severity of impairment encountered more environmental barriers and those experiencing more environmental problems also had greater restrictions in participation. The CASE-C scores were found to distinguish children on the basis of disability condition and impairment severity, but not on the basis of age or sex. The CASE-C is valid for assessing environmental problems experienced by children and youth with disabilities in Taiwan.


Assuntos
Transtornos Globais do Desenvolvimento Infantil , Avaliação da Deficiência , Crianças com Deficiência , Meio Ambiente , Deficiência Intelectual , Meio Social , Participação Social , Adolescente , Criança , Análise Fatorial , Feminino , Humanos , Masculino , Reprodutibilidade dos Testes , Índice de Gravidade de Doença , Taiwan , Traduções
13.
J Formos Med Assoc ; 113(5): 303-12, 2014 May.
Artigo em Inglês | MEDLINE | ID: mdl-24746116

RESUMO

BACKGROUND/PURPOSE: Previous cohort studies for the general pediatric population had a limited focus on either environmental or biological influences, or a specific theoretical framework. The child's development, however, is a composite of physical, mental, social, environmental, and personal factors. The framework of the International Classification of Functioning, Disability and Health-Children and Youth Version (ICF-CY) provides a comprehensive model for investigating the influential factors of child development within a biopsychosocial perspective. METHODS: A birth cohort study followed up 122 child-parent dyads at birth and when the children were 4 months, 6 months, and 2.5 years old. Structural equation modeling was conducted based on the concept and the definitions of ICF-CY. RESULTS: The path coefficients linking exposures and outcome variables were significant except for the paths from birth weight to general development of infants and toddlers. Home environment explained 59% of variance of infant developmental outcomes. CONCLUSION: The proposed model based on ICF-CY showed acceptable fit to the data and provides support for the importance of the home environment on general development of infants and toddlers.


Assuntos
Desenvolvimento Infantil , Classificação Internacional de Funcionalidade, Incapacidade e Saúde , Peso ao Nascer , Pré-Escolar , Estudos de Coortes , Meio Ambiente , Feminino , Humanos , Lactente , Recém-Nascido , Masculino , Temperamento
14.
Disabil Rehabil ; 36(25): 2187-94, 2014.
Artigo em Inglês | MEDLINE | ID: mdl-24601863

RESUMO

PURPOSE: The aim of this article is to examine the component of "personal factors" described as a contextual factor in the ICF and ICF-CY. METHODS: A critical examination of the construct of "personal factors" and description of the component was made with reference to conceptual and taxonomic criteria. RESULTS: The "personal factors" component in the ICF/ICF-CY is not defined, there is no taxonomy of codes, there is no explicit purpose stated for its use and no guidelines are provided for its application. In spite of these constraints, the component of "personal factors" is being applied as part of the classifications. Such uncontrolled applications constitute significant risks for the status of ICF/ICF-CY as the WHO reference classification in that: (a) the component is accepted for use by default simply by being applied; (b) component content is expanded with idiosyncratic exemplars by users; and (c) there is potential misuse of "personal factors" in documenting personal attributes, including "blaming the victim". CONCLUSION: In the absence of formal codes, any application of the component of "personal factors" lacks the legitimacy that documentation with a scientific taxonomy should provide. Given the growing use of the ICF/ICF-CY globally, a priority for the revision process should be to determine if there is in fact need for "personal" or any other factors in the ICF/ICF-CY. IMPLICATIONS FOR REHABILITATION: A central contribution of the ICF/ICF-CY is the universal language of codes for the components of body structure, body function, activities and participation and Environmental Factors. As such the codes provide taxonomical legitimacy and power for documenting dimensions of functioning and disability in clinical and rehabilitation contexts. As there are no codes of "personal factors", there is no basis for documentation of the component. Demographic information, if needed for identification, should be recorded in customary formats, independent of any component or codes of the ICF/ICF-CY.


Assuntos
Classificação Internacional de Funcionalidade, Incapacidade e Saúde/normas
16.
Disabil Rehabil ; 36(13): 1120-7, 2014.
Artigo em Inglês | MEDLINE | ID: mdl-24261455

RESUMO

PURPOSE: Agenesis of the corpus callosum (ACC) is a congenital condition in which the corpus callosum fails to develop fully. In the literature, ACC has been broadly conceptualized and inconsistently described. This article demonstrates how the universal language of the International Classification of Functioning, Disability and Health-Children and Youth can increase the specificity with which researchers and clinicians describe the variable manifestations of ACC. METHODS: The database for this article was based on a review of 83 studies on developmental and neuropsychological manifestations of congenital ACC in children and adolescents. First, the extent to which the findings on ACC could be documented using the taxonomic codes in the ICF-CY was examined. Next, the findings from each study were mapped onto the ICF-CY to summarize the distribution of clinical features reported in the literature. RESULTS: There was a high degree of correspondence between the reported findings and the taxonomic codes of the ICF-CY. The distribution of clinical features was discussed. CONCLUSIONS: This taxonomic application advances the ICF-CY as a common language for researchers and clinicians who work with children who have ACC. Implications for Rehabilitation Agenesis of the corpus callosum (ACC) is a condition that has been broadly conceptualized and inconsistently described in research and practice. The variable clinical manifestations of children with ACC can be most effectively described using the ICF-CY. The application of the ICF-CY to conditions with highly variable clinical manifestations, like ACC, positively impacts research and practice.


Assuntos
Agenesia do Corpo Caloso/classificação , Agenesia do Corpo Caloso/reabilitação , Crianças com Deficiência/classificação , Crianças com Deficiência/reabilitação , Adolescente , Agenesia do Corpo Caloso/fisiopatologia , Criança , Pré-Escolar , Humanos , Lactente , Recém-Nascido , Classificação Internacional de Funcionalidade, Incapacidade e Saúde , Terminologia como Assunto , Adulto Jovem
17.
Disabil Rehabil ; 36(2): 89-104, 2014.
Artigo em Inglês | MEDLINE | ID: mdl-23594061

RESUMO

PURPOSE: Environmental variables have been explored in studies of the development of young children with motor delays. Linking environmental variables to the International Classification of Functioning, Disability and Health - Children and Youth (ICF-CY), environmental factors (EFs) categories can provide a common language for documenting their contribution to developmental outcomes. This review of studies aimed to (1) link EFs for developmental outcomes in infants with or at risk for motor delays to ICF-CY categories and (2) synthesize the influences of EFs (with ICF-CY linkage) on developmental outcomes. METHOD: A systematic literature search was performed of multiple databases. After applying selection criteria, environmental variables in 28 articles were linked to ICF-CY categories and underwent qualitative synthesis. RESULTS: Results indicated that physical environmental variables could be linked successfully to ICF-CY EFs categories, but not social environmental variables. Multiple environmental variables were associated with motor and other developmental outcomes. CONCLUSION: Difficulties in linking social factors to ICF-CY categories indicate that additional EFs codes may need to be considered in the ICF-CY revision processes. The review provides empirical data on relationships between EFs and developmental outcomes in children with or at risk for motor delay.


Assuntos
Deficiências do Desenvolvimento , Comunicação Interdisciplinar , Classificação Internacional de Funcionalidade, Incapacidade e Saúde , Transtornos das Habilidades Motoras , Pré-Escolar , Deficiências do Desenvolvimento/classificação , Deficiências do Desenvolvimento/diagnóstico , Avaliação da Deficiência , Crianças com Deficiência , Meio Ambiente , Humanos , Lactente , Transtornos das Habilidades Motoras/classificação , Transtornos das Habilidades Motoras/diagnóstico , Avaliação de Resultados em Cuidados de Saúde/métodos , Medição de Risco/métodos , Mudança Social
18.
Health Qual Life Outcomes ; 11: 75, 2013 May 04.
Artigo em Inglês | MEDLINE | ID: mdl-23642162

RESUMO

UNLABELLED: Children with chronic conditions often experience a long treatment which can be complex and negatively impacts the child's well-being. In planning treatment and interventions for children with chronic conditions, it is important to measure health-related quality of life (HrQoL). HrQoL instruments are considered to be a patient-reported outcome measure (PROM) and should be used in routine practice. PURPOSE: The aim of this study was to compare the content dimensions of HrQoL instruments for children's self-reports using the framework of ICF-CY. METHOD: The sample consist of six instruments for health-related quality of life for children 5 to 18 years of age, which was used in the Swedish national quality registries for children and adolescents with chronic conditions. The following instruments were included: CHQ-CF, DCGM-37, EQ-5D-Y, KIDSCREEN-52, Kid-KINDL and PedsQL 4.0. The framework of the ICF-CY was used as the basis for the comparison. RESULTS: There were 290 meaningful concepts identified and linked to 88 categories in the classification ICF-CY with 29 categories of the component body functions, 48 categories of the component activities and participation and 11 categories of the component environmental factors. No concept were linked to the component body structures. The comparison revealed that the items in the HrQoL instruments corresponded primarily with the domains of activities and less with environmental factors. CONCLUSIONS: In conclusion, the results confirm that ICF-CY provide a good framework for content comparisons that evaluate similarities and differences to ICF-CY categories. The results of this study revealed the need for greater consensus of content across different HrQoL instruments. To obtain a detailed description of children's HrQoL, DCGM-37 and KIDSCREEN-52 may be appropriate instruments to use that can increase the understanding of young patients' needs.


Assuntos
Indicadores Básicos de Saúde , Vigilância da População/métodos , Qualidade de Vida , Autorrelato/normas , Adolescente , Criança , Pré-Escolar , Doença Crônica , Crianças com Deficiência , Feminino , Humanos , Masculino , Avaliação de Resultados em Cuidados de Saúde , Psicometria , Sistema de Registros , Suécia
19.
Scand J Caring Sci ; 27(3): 616-23, 2013 Sep.
Artigo em Inglês | MEDLINE | ID: mdl-22891972

RESUMO

BACKGROUND: High-quality documentation of children's health is an important priority in health care given trends of declining mental health and reduced well-being in children. There is a lack of information concerning psychosocial health in the standardized part of the national health record in the Child Health Service and the School Health Service in Sweden. Further, little is known if the free text notes in the health record, besides information on physical health, also include information on children's psychosocial health. The aim of this study was to describe what is recorded concerning children's health and development in free text notes. METHODS: The study was based on a retrospective analysis of text using an inductive approach for qualitative analyses of content. RESULTS: The analysis of the free text notes in the health records yielded seven categories: development, family, health problems, living habits, medical issues, preschool/school and leisure, and well-being. The categories mainly covered psychosocial aspects of health and were not only about health and development problems of the child but also what was covered during the visits. The information was unevenly distributed across the ages. A stronger focus on the youngest age groups within a family and preschool setting is needed. There was novel information in the free text notes such as pain, general health, emotions, mother's mental health and leisure activities, which was not covered in the standardized part of the health records. CONCLUSION: The free text notes mainly reflected a psychosocial perspective on health. The findings of this study suggest that requesting more information on children's psychosocial health in the standardized part of the health records could contribute to more comprehensive and informative health records in the Child health Service and the School Health Service in Sweden.


Assuntos
Paralisia Cerebral/psicologia , Proteção da Criança , Prontuários Médicos , Pais/psicologia , Adaptação Psicológica , Criança , Estudos Transversais , Humanos , Estresse Psicológico , Suécia
20.
Disabil Rehabil ; 35(10): 868-73, 2013 May.
Artigo em Inglês | MEDLINE | ID: mdl-22889189

RESUMO

PURPOSE: The International Classification of Functioning, Disability and Health (ICF) was introduced in Portuguese education law as the compulsory system to guide eligibility policy and practice in special education. This paper describes the implementation of the ICF and its utility in the assessment process and eligibility determination of students for special education. METHODS: A study to evaluate the utility of the ICF was commissioned by the Portuguese Ministry of Education and carried out by an external evaluation team. A document analysis was made of the assessment and eligibility processes of 237 students, selected from a nationally representative sample. RESULTS: The results provided support for the use of the ICF in student assessment and in the multidimensional approach of generating student functioning profiles as the basis for determining eligibility. The use of the ICF contributed to the differentiation of eligible and non eligible students based on their functioning profiles. CONCLUSIONS: The findings demonstrate the applicability of the ICF framework and classification system for determining eligibility for special education services on the basis of student functioning rather than medical or psychological diagnose. IMPLICATIONS FOR REHABILITATION: The use of the International Classification of Functioning, Disability and Health (ICF) framework in special education policy is as follows: • The functional perspective of the ICF offers a more comprehensive, holistic assessment of student needs than medical diagnoses. • ICF-based assessment of the nature and severity of functioning can serve as the basis for determining eligibility for special education and habilitation. • Profiles of functioning can support decision making in designing appropriate educational interventions for students.


Assuntos
Avaliação da Deficiência , Pessoas com Deficiência/classificação , Educação Inclusiva/métodos , Definição da Elegibilidade , Classificação Internacional de Doenças , Atividades Cotidianas/classificação , Pessoas com Deficiência/reabilitação , Educação Inclusiva/legislação & jurisprudência , Humanos , Políticas , Portugal , Estudantes
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