Pathways of parental adjustment to disability: a incursion on the perceptions of families of children with Special Educational Needs

Abstract

Social support as transactional and dynamic process that embraces a wide range of resources provided to an individual or group of members of their social network is an important variable in the development trajectories of families of children with Special Educational Needs (Felizardo, 2009). It provides emotional, instrumental, information support and empathy, necessary to meet the needs of help, directly and indirectly affecting parental and family functioning and well-being (Altiere, 2006; Dunst, Trivette & Jodry, 1997; Sarandon, Sarandon & Pierce, 1994). In this context, this study aims to examine parental perceptions of the role of social support in the process of adjustment to disbility (reactions to diagnosis, barriers and parental stress, coping strategies, types of support, parental and family changes, perspectives on children and future expectations). It is a qualitative and comprehensive study of the phenomena and, to that purpose, we formed a sample of parents of children with different cognitive problems and disorders of autism (high and low functioning), from a district in the central region of Portugal. The sample selection was performed by professionals and teachers of the institutions (associations and schools) where we developed research, and parents were selected with high parental involvement in educational process. The instrument for data collection was a semi-structured interview that, in general, covers demographic aspects and other information related to the past, present and future trajectories of parental and family development. The analysis of the discourses of the parents suggests a significant parental involvement educational and therapeutic, good levels of formal and informal support processes, the use of coping strategies focused on problem-solving and positive perceptions on children and on parenting changes, despite these results, the discourses indicates a high stress resulting from parental demands and barriers in the management of daily life. Parents are bound to the institutions and reveal close relationships with other parents, with whom they share the problems, enjoy important emotional and informational support under the parental adjustment. We also propose measures and actions of family intervention.