At the time of diagnosis the needs of the son with Fragile X syndrome are priority

Abstract

Families with a child with Fragile X syndrome (SXF) experience concerns and needs at the time of diagnosis that can trigger a crisis and affect family dynamics and well-being. This study, we analyze those manifested by 55 parents, 69,0% women and 25,9% men, between 27 and 67 years old (M = 47,91, SD = 9,59). The questionnaire “Development and Needs of Families” was applied. The most frequently verbalized needs as important or very important were: the possible health problems that your child may present, knowing the degree of dependence that your child will have, knowing what is going to happen in the future, knowing where to go for help, and know what are the most appropriate services. In contrast, the items with values, between little and something important, are those that evaluate the fact of having to stay longer at home and having to communicate the news to other people. Parents give more importance to the needs and problems related to the care, attention and future of their child than those that the disability may cause them or other family members.

Keywords

• síndrome x frágil
• familia
• discapacidad intelectual
• diagnóstico