Analysis of the emotional impact of Rett Syndrome in the family contex

Abstract

Introduction. Most research about Rett Syndrome have been focused on clinical knowledge, offering few information about family context. Considering this gap in the scientific literature, a study aimed at analyzing the family impact of this disease (including Early Intervention context) is proposed.

Method. Hence, four variables related to emotional impact (anxiety, depression, maladjustment and resilience) are analyzed by an expostfacto design. Main sample is constituted by 222 people, related to a Rett Syndrome person in Spain.   

Results. Family linked to the Syndrome have high levels of anxiety, maladjustment and resilience. In contrast, they have low prevalence of depressive disorders. Moreover, the age of diagnosis is reached late (5 years), perpetuating the emotional impact on the family system and makes it difficult to get used to the new situation.

Discussion and Conclusion. Considering the emotional impact of the family members the study concluded that the presence of anxiety and maladjustment is a reality. Consequently, family members assume difficulties to approach new changes that have arisen in the family system. Resilience has been highly representative (unlike depression), concluding that family members living with Rett Syndrome follow a profile of resilient family with the ability to overcome pressure situations, seeking emotional balance and control.

Keywords: Early Intervention; Rett Syndrome; emotional problems; family and disability.