THE QUALITY OF LIFE OF THE PARENTS OF A CHILD WITH RUBINSTEIN-TAYBI SYNDROME

Background: The goal of our study was to examine the functioning of a family with a child who has Rubenstein-Taybi syndrome (RSTS) in respect to the quality of life (QOL) of the child's parents. We used measures associated with the parents' QOL, an evaluation of the child's psychomotor development and temperament, sociodemographic variables, and psychological variables, such as parental attitudes and coping styles. Material/Methods: We used our own clinical history questionnaire; participatory observation; analysis of medical documentation; the Self-Anchoring Ladder; the Satisfaction with Life Scale; the Good Marriage Questionnaire; the Parental Attitudes Scale; the Coping Inventory for Stressful Situations; the Emotionality, Activity, and Shyness temperament questionnaire; and the Bayley Scales of Infant Development - Third Edition. Results: The child's disability affects the parents' QOL negatively. In this case, the child's mother subjectively evaluates marital functioning at a lower level than does the father. Parental attitudes and coping styles differ in the two parents: the mother shows emotional/avoidance behavior, while the father is more task-oriented. The mother's attitude towards the child is more negative, especially in terms of non-acceptance, rejection, denial of autonomy, and inconsistency. Both parents display an adequate level of care and concern. Conclusions: The parents of an RSTS child require particular support, which should encompass the entire family system. This support should be predicated on an analysis of the family's available resources, as well as the barriers and difficulties that prevent them from fulfilling their roles.