The International Classification of Functioning, Disability and Health-ICF addresses the broad need for a common language and classification of functioning and disability. A parallel need is appropriate measures compatible with the content of the ICF to document the nature and impact of limitations of function, activities and participation. The interaction of developmental characteristics and disability among children represent special challenges for classification as well as measurement. Demographic trends emphasize the need for universal measures that encompass the components of the ICF and can be used in surveillance, screening and evaluation. This paper identifies issues related to application of the ICF to measure disability in childhood; reviews approaches and tools to assess childhood disability and identifies priorities for the development of measures of functioning and disability in children based on the ICF. The development of measures should be framed within a framework of children's rights and application of the biopsychosocial model to document profiles of functioning and disability of children.
Much of the focus on the relationship between parents and professionals in early intervention has been on the rationale for working with families and the processes by which that rationale should be implemented. Although some discussion has occurred regarding desired outcomes, approaches and strategies by which the attainment of family outcomes could be documented have not been widely discussed or agreed upon by the field. In this article we suggest eight questions that could serve as a framework for determining the extent to which early intervention has accomplished the goals inherent in a family-centered approach. Conceptual issues and methodological considerations associated with documenting these outcomes are presented, and recommendations regarding implementation and future directions are made.
A 35-item parent survey was developed to assess the functional needs of parents with young handicapped children. A rationale for scale development and content is presented. Data from 34 two-parent families with handicapped infants suggest that the instrument is a useful source of intervention goals. Several items emerged as high priority needs for mothers and fathers. Addition of an open-ended response format provided a considerable amount of useful information. A readministration of the measure 6 months later with a subset of 20 families yielded high correlations. Implications of these findings for clinicians working with families of young handicapped children are discussed.
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 395 children (93 children with developmental disabilities and delays, 302 without developmental disabilities and delays) between 0–5 years (mean = 35.33 months, SD = 20.29) and residing in North America. Interventions Not applicable. Main Outcome Measure(s) The YC-PEM includes three participation scales and one environment scale. Each scale is assessed across three 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 weeks) ranged from .31 to .93 for participation scales and from .91 to .94 for the environment scale. One of three participation scales and the environment scale demonstrated significant group differences by disability status across all three settings, and all four scales discriminated between disability groups for the daycare/preschool setting. The participation scales exhibited small to moderate positive associations with functional performance scores. Conclusion(s) 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.
The subjects were 90 children between 6 and 15 years of age, 30 with autistic, 30 with mentally retarded, and 30 with nonhandicapped brothers or sisters. The children were questioned about their sibling relationships in an open-ended interview, and, in the case of children with handicapped siblings, they also responded to questions about particular problems they faced in regard to their brothers or sisters. In addition, mothers filled out a behavior rating scale in which they described the positive and negative aspects of their children's behavior toward the sibling. In general, children and mothers rated the sibling relationships positively. Group comparisons indicated that children with autistic and mentally retarded siblings did not differ on any self-report measures. Children with nonhandicapped siblings reported that their family relations were slightly more cohesive but otherwise did not differ in terms of their self-reports from children with handicapped siblings. Mothers of nonhandicapped children, however, rated the sibling relationships more negatively than did mothers of handicapped children. Further analyses revealed that status variables (age, gender, family size) were not as highly correlated with the quality of sibling relationships with handicapped children as were specific problem areas (e.g., perceptions of parental favoritism, coping ability, concerns about the handicapped child's future).
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