| The incidence of neural tube defects is 1.7 to 3 per 1,000 live births in the United States with 130 such births each year in Michigan. Myelodysplasia (also known as myelomeningocele and/or spina bifida) is the most common (60%) of the neural tube defects and is the one defect most frequently associated with survival. Because of improved surgical and medical techniques, increasing numbers of children with this defect are surviving and living with their families. Although myelodysplasia is a serious birth defect, persons with this defect grow to live productive adult lives. The physical manifestations of myelodysplasia include hydrocephalus in 80% of the children, handicaps of locomotion and continence in 95%, and perceptual and learning disabilities and/or intellect below their unaffected siblings in 25%.; The birth of an infant with myelodysplasia affects the family in several ways because the infant requires special care in the home and in both the health care and educational systems. The "cost" of this special care in both energy expended by the family members and in monetary terms is but one effect on the family system. The long term outcome of families raising these children in the home is documented and indicates an increased incidence of divorce, separation, maternal malaise and sibling problems over families without children with chronic health problems (Richards & McIntosh, 1973; Tew & Laurence, 1973).; The conceptual framework selected for this research is the structural-functional approach to family study. Family functioning is conceptualized holistically as the activities of everyday life of the way in which the family, as a system, operates across many dimensions. Clinical observations, the review of family theory and the review of research related to children with myelodysplasia and their families suggest there are relationships among infant, parent and family environment variables and family functioning. Therefore, the purpose of this study was to examine the relationships among variables pertaining to the parents, to the infant with myelodysplasia and to the family environment with family functioning at five time intervals in the first 18 months following the birth of the infant.; The dependent variable, family functioning, is a composite score of family functioning across 21 indicators. The independent variables are composite scores of infant, parent and family environment variables as measured by specified items from the Parent Survey (Feetham & Perrin, 1977), Profile of Mood States (POMS) (McNair, Lorr & Droppleman, 1971), and infant hospital records and developmental testing using the Early Intervention Development Profile (Rogers & D'Eugenio, 1977).; The subjects for this descriptive longitudinal study were parents and their infants with myelodysplasia admitted to a Myelodysplasia Care Center in a large urban pediatric hospital. The study sample was a total of 38 infants and 66 parents (38 mothers and 28 fathers) who both met the study criteria and agreed to participate.; Three hypotheses were tested in this study. Multiple linear regression with stepwise inclusion and listwise deletion was used to test Hypotheses I and II. A simple ANOVA with repeated measures and t tests were used to test Hypothesis III.; Hypothesis I, that the infant and parent-family environment predictor variables add significant information to the ability to predict family functioning at 3, 6, 12 and 18 months, was supported by the data. However, Hypothesis II, that the infant composite score variables would account for a greater proportion of variance than the parent variables in predicting family functioning, was not supported. Also, Hypothesis III, that the family functioning discrepant score would be higher at the one year annivesary of the infant's birth than at 3, 6 and 18 months, was not supported by the data. |
