Colección: La Educación
Número: (129-131) I,III
This study examined sociodemographic characteristics and current family needs in a sample of 49 families whose children were enrolled in special programs in Pelotas, southern Brazil. This sample has a low educational profile, showing an average of 6 years of schooling. The illiteracy rate was 8.5% for mothers and 7.5% for fathers. These findings are similar to the 1990 census for the state of Rio Grande do Sul, and are compared to the 17.8% national illiteracy rate in Brazil (IBGE 1990). Paternal occupation was classified according to the Bronfman and Tuiran Classification (1984), and is composed primarily of semi-skilled industrial workers and other public services workers. Among the mothers, 67% were home-makers or unemployed. Even in Brazil, this high level of women out of the economically active population is somewhat surprising. In the last decade, substantial changes have occurred in Brazil, and the number of women working outside the home has sharply increased (Victora, Barros and Vaughan 1988). It is possible that this sample of mothers stayed at home because of the additional caretaking needs of their children.
For families with limited income, these schools have the only available multidisciplinary services for children with special needs in Pelotas. Children attending either school belong to a low socioeconomic strata of the population. Two-thirds of families reported a monthly income of 1 to 3 times the minimum wage (US$70-210). None had a monthly income higher than 10 times the minimum wage. This fact raises two important questions. First, are these schools unprepared to offer services to wealthy families? Second, do wealthy families prefer to assist their children at home with private individualized services because of the social stigma? Empirical data are needed to support these findings. Further research with a focus on tracking every child with a disability in the city can clarify these questions.
Children participating in the study were of the average age of 6.5 years. There is a substantial number of children (45%) who were enrolled in an early intervention program. This data may represent an advance in service delivery and early screening, even though the early intervention program in Pelotas does not have the same features of the US early intervention programs (Shonkoff and Meisels 1990; Ager 1990). It should be noted that 26% of the children are between 7 and 10 years old, and 18% started attending schools after 10 years of age demonstrating variability in program initiation differences among programs of both places.
The first person to suspect the childs problem was a family member, usually mothers and grandmothers (46.7%). Physician raised initial suspicion in 38.8% of the cases. This finding is consistent with previous research conducted by Nelson (1986) that revealed that only 39% of pediatricians and 29% of family physicians performed developmental evaluation of high-risk infants during office visits. The lack of technical training in the recognition of developmental delays (Cusminsky and Galli 1990) could be an explanation for the low rates of physician suspicion of developmental problems. Also the low access that these population have to systematic preventive pediatric care (PAHO 1990) could be related to this issue. The predominance of the medical model, the shortage of other professionals and the lack of collaborative and multidisciplinary approaches to children with special needs are all limitations in the diagnostic and intervention process.
A concern in diagnosing developmental disabilities is the length of time between the diagnosis and service delivery. In the study sample, the average length of time was 17.9 months. The extremely long waiting period may be associated with an aggravation of the childs condition and may limit the acquisition of developmental skills (Lewis 1987; Shonkoff and Hause-Cram 1987). In the present study, 12% of the children started receiving services 60 months after the diagnosis. This percentage raised the average mean of service provision and showed the precarious reality of the referral system for familiies and children with special needs.
The feelings and reactions expressed by mothers in regard to the diagnosis of the child seem to be in accordance with previous studies (Ramos, Hoffman and Regen 1985). The finding that professional care and school support (26.5%) were the major resources used by families to cope with the childs disability suggests the need for implementing and developing more and better-specialized programs and trained professionals for this population.
The comparison between the FNS in the US (Bailey, Blasco and Simeonsson 1992) and FNS in Pelotas reaffirms the idea that some family needs are universal.
It is interesting to note that the same needs that are high for U.S. families are also high for Pelotas families. The higher needs of families in Brazil could be explained by a lack of a systematic approach to families, and by the lack of family involvement in the scarce resources for children with disabilities in Brazil, as discussed earlier. The study demontrates important similarities in the needs expressed by families of both studies except in itens informational needs and financial needs. In such itens the curves, even higher, did not follow the same pattern, which agreed with sociocultural differences and characteristics of the studied population.
The results highlight the prime importance of understanding what the familys needs are and what they want for themselves and their children in order to achieve better interactions, interventions, and results. Another important finding with implication for professionals working in this field is the need for reading material. This need was expressed by almost all of the families (91.8%). Reading material on childrens disabilities are not readily available in Brazil. The concept of advocacy is also not fully explored in the field of special education in Brazil, and it represents a large need expressed by families (89.8%). Huebner and Ormerod (1988) assert that intervention must establish specific goals to help parents cope with the disability. These goals include: making psychological contact and providing support, reducing the probability of negative outcomes, linking parents with helping resources, and follow-up. The higher level of needs demontrated in the study reaffirm the idea that in Pelotas, Brazil such goals are not being established.
It is important to consider some limitations of this study. The sample size of 49 can be a limitation because it represents only the population enrolled in the schools programs. The study involved primarily mothers as respondents, and therefore, paternal and sibling views on family needs were not specifically addressed. In addition, because of the low socioeconomic profile of families, the results may not indicate the needs of other strata of the population. For these reasons generalizations for Pelotas and other places in the country should be made cautiously. If we consider that 5% of children from birth to 15 years of age have some kind of disability (PAHO 1990), the coverage which these two programs provide is less than 20% for the city as a whole (Vaughan and Morrow 1992). The interpretation of some results that present significant statistical associations must be done carefully. Considering that this is a descriptive, cross-sectional study, it does not provide information about whether the exposure under study is itself responsible for the observed effect. These results can also be due to a mixing of effects between the exposure, the outcome, and a confounding variable. As pointed out by Hennekens and Buring (1987), cross-sectional studies are useful tools for raising questions for the presence of an association, rather than for testing a hypothesis. The results of the present study suggest that the use of an adapted version of FNS can yield reliable and valid scores. The scale appears to be a useful first-level screening tool to adequately measure family needs, which are crucial for research purposes, intervention, and programs implementation.