"Hun kan ikke snakke, men hun er søsteren min likevel!" : En kvalitativ studie om søsken til jenter med Retts syndrom.

Abstract

Abstract. How does having a sister with Retts syndrome affect life, both practically and emotionally?

There are few studies about being siblings of retarded children and most of them are about 20 years old. There is little information about siblings to severe retarded. Some Scandinavian studies say that the siblings are at risk of getting some extraordinary problems, to get less attention from the parents and get a lot of extra work because they help the parents. However, there are also positive aspects for the individual. Retts syndrome affects only girls and is a genetic disease. The condition involves a failure in the CNS development, and the girls are severe mentally, and often physically, retarded. Five siblings of girls with Retts syndrome are interviewed. They considered being sibling to a girl with Retts as mostly positive. They reported to having experienced what caring, nursing, tolerance, responsibility and patience can be. But being sibling to a retarded child remains an extensive influence on daily life; there are clear limits of what the family can do and everything has to be thoroughly planed. All though they looked after their sister, they felt that they have had normal social relationship both with their parents and with friends. Some reported discriminating comments about their sister and felt that they had to defend her. Many described a loss of a normal sister. Some reported bad conscience for not spending enough time with her and because they were ashamed of her.|