Mothers' assessments of the impact of children with spina bifida on the family.

This exploratory, descriptive study examined mothers' assessments of the impact of children with spina bifida on the family. A review of the literature indicated that families can be conceptualized as systems and that the impact of a child with spina bifida is experienced throughout the system. The subjects were a convenience sample of ten mothers of children ages 5 to 11 with spina bifida. Three instruments were used to collect data. The Child Health History and Demographic Questionnaire; the Impact on Family Scale (Stein & Riessman, 1980); and the Parent Concern Questionnaire. The instruments were administered to subjects in fixed order. Demographic and family impact data were collected in writing. Parent concern data were collected through audiotaped interviews. Demographic data were summarized for frequencies. Impact on Family scores were tabulated and compared to the score of a reference group using a two-tailed student's t-test and a p value of p less than or equal to .05. Wilcoxon rank-sum tests were run on the Impact on Family scores to examine for differences by income, presence of siblings, child's educational setting, and marital status. Parent concern data were content analyzed for themes. Mean scores of Impact on Family dimensions were not significantly different from a reference sample of mothers of children with chronic conditions. Within the sample, positive relationships were found between financial impact and the presence of siblings, impact on social relations and both single parenthood and having a child in special education, and coping and higher incomes. Mothers' concerns included their children's social development, rehabilitation, and independence issues. Impact issues included sibling protectiveness, conflicts with grandparents over the child with spina bifida, and financial costs. Most mothers reported optimism about their child with spina bifida.