Colección: La Educación
Número: (129-131) I,III
The Family Profile Questionnaire (FPQ), yielded the following data on the sociodemographic characteristics of the families in the study sample. Mean maternal age was 35.12 (S.D.= 9.80), and mean paternal age was 36.13 (S.D.= 8.06). Mean educational level of mothers in the study was 6.09 years in the school (S.D.= 3.41) and mean paternal education was 6.15 years (S.D. = 3.68). The study also found that 8.5% of the mothers, and 7.5% of the fathers were illiterate. Twenty seven percent of the mothers and 32.5% of the fathers had four years or less of schooling. Only 2% of the mothers and 2.5% of the fathers had studied more than 14 years. Data on parental occupation showed 32% of the mothers had some kind of paid employment. The majority of the mothers stayed at home or were unemployed. Among fathers, the unemployment rate was 6.1%.
Concerning marital status most of the mothers (75.5%) lived with a companion, either a legalized union or a non-formal union. The rest of mothers (24%) were single, divorced and widowed. According to the FPQ, the majority of the families (79%) are medium in size (up to 5 people). The monthly minimum wage in Brazil (70 dollars) was used to describe income groups. Seventy seven percent of the families reported a monthly income ranging from 1 to 3 times the minimum wage. Seven families (14.3%) earned 3 to 6 times the minimum wage a month, and 4 families (18.2%) earned 6 to 10 times the wage.
The children of the families represented in the study were of an average age of 6.5 years (SD=4.3). The majority of the children ranged in age between 1 and 7 years of age. Of the total number of children, 30 (62%) were male. The degree of severity of the childs disability was based on the diagnostic criteria used in the schools admission evaluation. According to the school records, 16 children (33.6%) had a mild disability, 12 children (24.4%) had a moderate disability, and 21 children (42%) had a severe disability. In several cases, children had dual diagnosis. For the purpose of analysis, these children were categorized according to their primary diagnosis. The distribution of the diagnosis are shown in Figure 1.
The person who first suspected the childs disability was investigated. Forty six percent of the childrens problems were first suspected by mothers and grandmothers. In two cases, this question did not apply. The diagnosis of the childs disability was made in the majority of cases by the physician (83.7%) and for the rest by other professionals. When investigating the length of time between the diagnosis and the point at which the child and family started receiving services, the average was 17.92 months (SD= 25.5). Six of these children (12%) started receiving services up to 60 months after the diagnosis was made, which raised the mean of this variable.
Family reactions and feelings at the time the diagnosis of the child was made are shown in the study. The most frequent reactions were sadness and depression, and shock and despair. The resourses used by families to cope with the disability were investigated. The most frequently utilized resourses were professional and school help, and family support.
In addition to specific responses to the Family Needs Survey, families listed additional necessities not included in the survey. Six families (12.2%) listed the need for more information about the childs problem, its etiology, and social acceptance of the child. Five families (10.2 %) described the need for additional information about community resources, electronic devices, and legal aspects related to the childs disability. Another five families (10.2%) wanted to discuss issues related to their childs future. How to deal with the childs sexuality was a topic listed for five families, and six parents (12.2%) stressed that transportation was an important need.