Analysis of family adaptation to children with Down syndrome during childhood using the Double ABCX model

Abstract

Introduction. The birth of a child with Down syndrome impacts on family life, requiring adaptation and adjustment. Families may differ in their ability to manage these changes, depending on the social support resources they have, as well as their strengths and coping skills. In this work, the Double ABCX model (McCubbin & Patterson, 1983) was implemented to analyse how parental stress, family cohesion and sense of coherence, adaptive capacity and coping strategies, together with the availability of social support contribute to satisfaction levels with family life in Spanish families of children with Down syndrome. The aim was also to identify which social characteristics of the family and children were linked to satisfaction and were satisfaction predictors. Methodology. The research approach was exploratory and quantitative. Nonprobabilistic sampling was used, obtaining a sample of 203 families of children with Down syndrome aged between 0 and 12 years. The data collection instruments were a self-designed socio-demographic questionnaire, as well as a variety of validated scales to measure family satisfaction and factors linked to it. Descriptive statistics, bivariate statistical significance tests and multiple linear regression analysis were used for the data analysis. Results. Families of children under 12 with Down syndrome presented high levels of satisfaction compared to families of children with other types of disabilities, thus confirming the Down syndrome advantage hypothesis. Families adopting an understanding, manageable and meaningful approach towards themselves, presenting strong emotional bonds among family members, and with problem-solving skills and strategies in crisis situations were more satisfied with their family life. The variability in the family life dimensions investigated was related to parents' income levels, the type of family, the child's schooling, and previous relationships with people with intellectual disabilities. Discussion. Some characteristics presented by the families studied were also present in other families of children with other types of disability. There was a variable degree, however, to which they were affected by stress, in their available resources, their level of coherence and, in short, in their possibilities of adapting to their new family situation. Conclusions. The research presented in this work is novel, as it is the first to apply this type of analysis to a sample of families of Down syndrome children in Spain. It showed that fostering and raising these children is a satisfactory experience for most families. The article identifies the key factors to stimulate and work on in order to support families. It also determines the sociodemographic, educational and social characteristics that increase family vulnerability and hinder the positive experience of raising these children.