Thesis Abstracts, 1995

This study investigated the psychosocial functioning of both parents and siblings of children with Rett syndrome. Parents provided data on standardized (Parenting Stress Index [PSI], Dyadic Adjustment Scale [DAS] and Family Environment Scale [FES]) and unstandardized (Social Environment Impact Scale and Symptom Impact Scale) questionnaires regarding family stress and functioning. Siblings also submitted data in the form of family drawings, paragraphs and Self-Concept Scales. The parents' scores on the PSI, DAQ and FES were compared to normative data. Rett syndrome families were more cohesive, organized and had less conflict, but also felt isolated from social supports. Scoring the impact of their children's unique symptoms and behaviors, parents revealed that stress highly correlated with severity. The child's communication and motor difficulties stressed parents most. Mothers had more responsibilities, but parents rated this division of burden as fair. Otherwise, few significant differences were found between mothers and fathers. Analyses of siblings' prose and pictures revealed that although some siblings had rather good levels of adaptation, just as many siblings exhibited extremely low levels of adaptation. Sibling birth order and gender were not correlated with adaptation. For both parents and siblings, there were few correlations between the affected child's characteristics and family adaptation. Increasing age of the child with Rett syndrome, however, correlated with better scores on some measures. The limitations and clinical applications of this study are discussed.