La adaptación de las familias con hijos/as con Síndrome de Downuna aproximación desde el modelo doble ABCX

Abstract

Traditional research of families with children with intellectual disabilities has taken as its starting point a dramatic look on such families, analyzing and highlighting the difficulties they had to face the negative impact after supposed arrival in the family a child with intellectual disabilities and hardly overcome. However, in recent years they have appeared testimonies that demonstrate the positive impact that raising a child with disabilities can lead to families who live far from traumatized are happy and proud of their children. This research show the processes which let the adaptation of families with children with Down syndrome between 0 and 12 years old. It have been studied the perception of 203 parents about how it has affected them and their families raising a child with intellectual disabilities, particularly with Down syndrome. For this it have been used the Double ABCX family adaptation model designed by McCubbin & Patterson (1983) from ABCX Hill model. This model, applied to families object of this work is to understand how a stressful event and the accumulation of demands that it entails (in this case the birth of a son / daughter with Down syndrome and the tasks that this entails for parents), families are able to mobilize their strengths and resources (personal, social and institutional), which along with the sense that the family gives her new family situation (taking into account their understanding, their management capacity and meaning), it leads them to a state of adaptation and adjustment, since they have achieved a balance between family demands and responsiveness, keeping the welfare of its members. The study results support the conclusion that the arrival of a child with Down syndrome to a family produces a strong impact in many areas, generating additional demand for care which involves raising any child without disabilities, given their health problems and the need to assist early intervention services. However, this strong impact is not reflected in increased stress of parents studied. Also parents studied have multiple personal and social resources to cope with the impact which is raising a son / daughter with Down syndrome have a high sense of family coherence. So we find families who have a high family satisfaction in terms of coherence and family adaptability. Keywords: Mental Retardation, Intellectual Disability, Down Syndrome, Family Adaptation, Model Double ABCX.