This study investigates the impacts of a retarded child on the family based on time diary data, other measures of family function, and characteristics of family members, family units, and their environment. A sample of families of retarded children will be obtained in cooperation with the Nation Down Syndrome Congress. A stratified random sample of 300 families will be selected and four waves of surveys will be administered. All four waves will collect surveys for mother (or other primary caregiver) and the retarded child. Two waves will be administered to fathers (or other adult) and a sibling. Time diary data will be obtained for two week days, Saturday and Sunday. These data will be collected by the same instruments and methods applied in 1982 to a national probability sample of American households. This will allow us to compare families of retarded children to other families on very detailed measures of family function, the most important of which is time allocation (level of time in 223 activities, place, others involved, and secondary activity for each family member). Major categories of activities include work, child care, house work, and active and passive leisure. Information will also be collected from each child's teacher. The information produced will be used to assess the effects on internal and external family function, interaction effects of other variables and the resources required (time, money, energy) to care for retarded children (and adults) at home. This information has significance for numerous research and policy issues including: the most appropriate measures of family function and stress; resources expended by family assistance needed to support deinstitutionalization; resources expended by families to care for retarded children compared to other children; demands and constraints placed on individual family members; effects on employment, earnings, education, social life, family life, aspirations, and perceived satisfaction with family and quality of life generally for each family member. The survey includes detailed demographic and social measures, as well as measures of the child's level of adaptive behavior, that can be used in multivariate analyses. Methods of analysis include simple and bivariate statistics, and single equation and structural equation models for multivariate analysis of the new data set and comparison to the 1982 national sample of families. In sum, the study will establish a new baseline of information on families of retarded children.

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Utah State University
Schools of Education
United States
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Barnett, W S; Boyce, G C (1995) Effects of children with Down syndrome on parents' activities. Am J Ment Retard 100:115-27