Problems and resources of families that support children with heavy multiple disturbances in development

Introduction: The number of children with severe and multiple developmental disorders (SMDD) is increasing.  These children suffer from intelligence disorder, speech, sensory sphere problems, general and fine motor skills, behavior and communication disturbance.  A family, having a child with SMDD, faces a complex of various not only medical, but also psychological and pedagogical problems that are related to functioning of family, with parents fulfilling various roles in raising a child with disabilities.  Specialists do not pay enough attention to the needs of parents and child’s family aspects with which he is raised.  It is necessary to shift focus of attention from children rehabilitation with special educational needs (SEN) to accompanying family as a rehabilitation system.  From the point of family-centered approach view, effectiveness of accompanying children with SMDD by specialists depends on extent to which it is possible to intensify and strengthen parents’ resources.

Objective: analysis for problematic areas and resources of families raising children with SMDD.

Materials and methods: the theoretical and methodological basis of study are: 1) theory of ecological systems by U. Bronfenbrenner, in which he relies on thesis of L.S.  Vygotsky on  the role of development of social situation in establishment of a child’s higher functions; 2) a system-factor approach in analysis of problem areas and family resources; 3) a resource approach to improving the quality of family life, raising a child with SMDD.  We  used system analysis, comparative and analytical methods.

Results: from standpoint of a family-centered approach, families having children with SMDD have identified various problematic areas and resources at the level of various ecological systems that help them overcome these problems.  The family problems and resources are interrelated and can be represented in the form of specific factors.

Discussion and Conclusions: the family which has a child with a disability faces a complex of various medical, psychological, educational, informational and material problems. From the point of view of  family-centered approach,  the problems and resources of a family raising a child with SMSD are considered at the level of micro-meso-exo-macrosystems. In each system, there are factors that act as problematic  areas that have a resource potential for improving life quality of a family raising a child with SSD. The proposed system-factor approach which helps to identify problematic areas and resources of a family raising children with SMSD can be used to render early assistance effectively  and coordinate activities of specialists.

Scientific novelty. It is proposed to consider the problematic areas and resource statuses for families raising children with SMDD. From standpoint of family-centered approach and ecological (micro, meso, exo, macro) systems, the specifying factors affecting the quality of family life are :  pre-school, correctional and rehabilitative and public-state factors.

Practical significance.  The proposed system-factor approach to identifying problematic areas and resource statuses for families raising children with can be used to render early assistance and coordinate activities of specialists.

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