6533b82dfe1ef96bd129150b

RESEARCH PRODUCT

Impact of Fragile X Syndrome on Their Families

Beatriz Hidalgo-alésConcha Iriarte-redínManuel Soriano-ferrer

subject

congenital hereditary and neonatal diseases and abnormalities030506 rehabilitationfamilySocial Psychologyfragile x syndromeFamily functioninglcsh:BF1-990trastorno de la conductaanálisis comparativo03 medical and health sciencesDevelopmental and Educational Psychologymedicine0501 psychology and cognitive sciencessituación familiar05 social sciencesSíndrome X Frágil (SXF)vida familiarmedicine.diseaseSindrome deFragile X syndromeClinical Practicelcsh:Psychologylcsh:Bimpactlcsh:Philosophy. Psychology. Religion0305 other medical sciencePsychologyHumanitiestrastorno emocional050104 developmental & child psychology

description

espanolEl objetivo del presente estudio es describir las alteraciones conductuales y emocionales en el sindrome de X fragil (SXF) y analizar las reperecusiones de tener un miembro con SXF en diferentes aspectos del funcionamiento familiar. Participaron 79 padres con un miembro con SXF y 80 padres con un miembro con desarrollo tipico. Los resultados mostraron que entre el 17% y el 66% de los ninos y adolescentes con SXF mostraron trastornos conductuales y emocionales significativos y menos comportamientos prosociales. Ademas, despues de controlar las dificultades emocionales y de comportamiento, nuestros resultados mostraron que las familias afectadas por SXF experimentaron un impacto mas negativo en los sentimientos relativos a la crianza de los hijos, las finanzas, los hermanos y el grado de dificultad de vivir con un nino o adolescente con SXF y mas capacidad de adaptacion familiar y cohesion que el grupo de comparacion. Como conclusion, nuestros resultados destacan que en la practica clinica es importante tener en cuenta estas diferencias al apoyar y asesorar a las familias afectadas por SXF EnglishThe aim of the present study is to describe the behavioral and emotional disturbances in the Fragile X Syndrome (FXS) and to analize the impact of having a member with FXS on different aspects of family functioning. A sample of 79 parents with a member with FXS and 80 parents with a member with typical development participated in the study. Results showed that between 17% and 66% of children and adolescents with FXS displayed significant behavioral and emotional disturbances and fewer prosocial behaviors. In addition, after controlling for behavioral and emotional difficulties, our results showed that families affected by FXS experienced a more negative impact on feelings about parenting, finances, siblings, and the degree of difficulty of living with a child or adolescent with FXS, and greater family adaptability and cohesion than the comparison group. In conclusion, our results highlight that it is important to consider these differences in clinical practice when supporting and counselling families affected by FXS.

https://doi.org/10.5093/psed2020a12