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Stress and family functioning in parents of girls with Rett syndrome

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Abstract

Mothers and fathers of 29 girls with Rett syndrome provided data about their levels of parenting stress, marital adjustment, and family functioning. Their scores were compared to normative and clinical samples. The parents of girls with Rett syndrome reported more stress, lower marital satisfaction, and certain adaptations in family functioning compared to norms. However, most parents scored in the normal range on most measures and their scores were not related to SES. There was little relationship between specific characteristics of the daughter with Rett syndrome, such as her age and level of functioning, and her parents' scores on these measures. There were few significant differences between mothers' and fathers' scores. Results are discussed in terms of patterns of family adaptation and coping. Clinical implications are also discussed.

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The authors gratefully acknowledge the Canadian Rett Syndrome Association and Jo Nanson for assistance in recruiting subjects, and all the parents who participated. We also thank Carol Haddad for her help with data collection and assessing the girls. Portions of this paper were presented at the Ontario Association on Developmental Disabilities annual conference, Ottawa, Ontario, March 1991. We appreciate the administrative support of Thistletown Regional Centre and the Thistletown Foundation. However, the views expressed in the article are those of the authors and do not necessarily represent the views of Thistletown Regional Centre or the Ontario Ministry of Community and Social Services. We sincerely thank Dugal Campbell of the Ontario Mental Health Foundation for his flexibility and kind support. The program was sponsored by the Ministry of Community and Social Services, Ontario; administered by the Research and Program Evaluation Unit in cooperation with the Ontario Mental Health Foundation; and funded from the “Interprovincial” Lottery Research Program.

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Perry, A., Sarlo-McGarvey, N. & Factor, D.C. Stress and family functioning in parents of girls with Rett syndrome. J Autism Dev Disord 22, 235–248 (1992). https://doi.org/10.1007/BF01058153

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