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Young children with spina bifida: Secondary conditions and quality-of-life
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YOUNG CHILDREN WITH SPINA BIFIDA: SECONDARY CONDITIONS AND QUALITY-OF-LIFE Gail S. Huntington, Ph.D., Principal Investigator Rune J. Simeonsson, Ph.D., M.S.P.H., Principal Investigator Janey L. Sturtz, Graduate Research Assistant Deborah L. Halperin, Graduate Research Assistant Frank Porter Graham Child Development Center University of North Carolina at Chapel Hill 521 South Greensboro Street, CB #8185 Chapel Hill, NC 275998185 (919) 966-5038 FAX (919) 966-0862 This session will present the results of a research study examining the development of secondary conditions and quality of life in children with spina bifida. Implementing an agenda for preventing secondary conditions requires that a knowledge base be built of their natural history and epidemiology. The objective specified for this research study is to develop such a knowledge base for children with spina bifida in North Carolina. The research project approaches this goal over a two-year period through three related objectives: documenting the long term morbidity and secondary conditions among children with spina bifida and their families, assessing social, psychological and environmental variables mediating such consequences for children, and identifying risk and resilience factors that could prevent secondary conditions and promote quality of life. Data will be presented on 35 children ranging in age from birth through eight years, identifying secondary conditions and their relationship to quality of life. Results from a comprehensive battery of quantitative and qualitative measures will be presented. Data have been collected through direct contact with children and families, in addition to information provided by early intervention and elementary school teachers designated by the family. Of central focus for this presentation will be the functional assessment of various characteristics of children (ABILITIES Index), developmental and behavioral indices (Carolina Record of Individual Behavior), cognitive measures (selected subtests from the Wechsler intelligence scales), descriptions of the family context (Family Needs Survey and a structured interview), and the ecological context (Inventory of Services and Resources). It is important to keep in mind the variability of the manifestation of spina bifida in children. Preliminary analysis of the data indicate that individual differences in developmerit are apparent. For example, children’s cognitive development scores range from significantly below average to well within the normal range. With regard to functional assessment, parents report several areas that have been affected by the impairment, however, they describe other areas that are strengths for the children. The type and number of secondary conditions vary with respect to a child’s specific condition and chronological age. Overall variability of these and other measures for the total sample will be presented along with implications for qualityof-life.
YOUNG CHILDREN WITH SPINA BIFIDA: SECONDARY CONDITIONS AND QUALITY-OF-LIFE Gail S. Huntington, Ph.D., Principal Investigator Rune J. Simeonsson, Ph.D., M.S.P.H., Principal Investigator Janey L. Sturtz, Graduate Research Assistant Deborah L. Halperin, Graduate Research Assistant Frank Porter Graham Child Development Center University of North Carolina at Chapel Hill 521 South Greensboro Street, CB #8185 Chapel Hill, NC 275998185 (919) 966-5038 FAX (919) 966-0862 This session will present the results of a research study examining the development of secondary conditions and quality of life in children with spina bifida. Implementing an agenda for preventing secondary conditions requires that a knowledge base be built of their natural history and epidemiology. The objective specified for this research study is to develop such a knowledge base for children with spina bifida in North Carolina. The research project approaches this goal over a two-year period through three related objectives: documenting the long term morbidity and secondary conditions among children with spina bifida and their families, assessing social, psychological and environmental variables mediating such consequences for children, and identifying risk and resilience factors that could prevent secondary conditions and promote quality of life. Data will be presented on 35 children ranging in age from birth through eight years, identifying secondary conditions and their relationship to quality of life. Results from a comprehensive battery of quantitative and qualitative measures will be presented. Data have been collected through direct contact with children and families, in addition to information provided by early intervention and elementary school teachers designated by the family. Of central focus for this presentation will be the functional assessment of various characteristics of children (ABILITIES Index), developmental and behavioral indices (Carolina Record of Individual Behavior), cognitive measures (selected subtests from the Wechsler intelligence scales), descriptions of the family context (Family Needs Survey and a structured interview), and the ecological context (Inventory of Services and Resources). It is important to keep in mind the variability of the manifestation of spina bifida in children. Preliminary analysis of the data indicate that individual differences in developmerit are apparent. For example, children’s cognitive development scores range from significantly below average to well within the normal range. With regard to functional assessment, parents report several areas that have been affected by the impairment, however, they describe other areas that are strengths for the children. The type and number of secondary conditions vary with respect to a child’s specific condition and chronological age. Overall variability of these and other measures for the total sample will be presented along with implications for qualityof-life.