Psychological Well-Being of Mothers and Siblings in Families of Girls and Women with Rett Syndrome
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Few published studies have reported on the psychological well-being of family members of individuals with Rett syndrome (RTT). Eighty-seven mothers of girls and women with RTT completed a questionnaire survey about their daughters’ behavioral phenotype, current health, and behavior problems, and their own and a sibling’s well-being. Mothers reported increased anxiety but similar levels of depression when compared to a normative sample. Across all problem domains on the Strengths and Difficulties Questionnaire, child and adolescent siblings (n = 39) were reported by mothers to have fewer difficulties than a normative sample. The severity of their daughters’ RTT behavioral phenotype predicted increased anxiety and stress for mothers. Increased RTT daughters’ current health problems predicted more maternal perceptions of positive gain.
KeywordsRett syndrome Siblings Mothers Maternal depression Strengths and Difficulties Questionnaire Families
The research reported in this paper was supported by a grant from the National Institute for Social Care and Health Research (Grant Number SCS/08-01). The information presented in this paper is the responsibility of the authors and does not necessarily reflect the views of the funding agency. The present paper is based in part on a doctoral dissertation submitted by the first author to Cardiff University. We wish to thank the families who participated in this study and also Rett UK, who have provided long term support for the British Isles Rett Syndrome Survey.
- Cianfaglione, R., Clarke, A., Kerr, M., Hastings, R. P., Oliver, O., & Felce, D. (in press). A national survey of Rett syndrome: Age, clinical characteristics, current abilities and health. American Journal of Medical Genetics.Google Scholar
- Einfeld, S. L., & Tonge, B. J. (1995). The Developmental Behaviour Checklist: The development and validation of an instrument for the assessment of behavioral and emotional disturbance in children and adolescents with mental retardation. Journal of Autism and Developmental Disorders, 25, 81–104.CrossRefPubMedGoogle Scholar
- Einfeld, S. L., & Tonge, B. J. (2002) Manual for the Developmental Behaviour Checklist (2nd edn). School of Psychiatry, University of New South Wales; Centre for Developmental Psychiatry, Monash University.Google Scholar
- Emerson, E., Hatton, C., Llewellyn, G., Blacker, J., & Graham, H. (2006). Socio-economic position, household composition, health status and indicators of the well-being of mothers of children with and without intellectual disabilities. Journal of Intellectual Disability Research, 50, 862–873.CrossRefPubMedGoogle Scholar
- Hastings, R. P., & Petalas, M. A. (2014). Self-reported behaviour problems and sibling relationship quality by siblings of children with autism spectrum disorder. Child: Care Health and Development, 40, 833–839.Google Scholar
- Herring, S., Gray, K., Taffe, J., Tonge, B., Sweeney, D., & Einfeld, S. (2006). Behaviour and emotional problems in toddlers with pervasive developmental disorders and developmental delay: Associations with parental mental health and family functioning. Journal of Intellectual Disability Research, 50, 874–882.CrossRefPubMedGoogle Scholar
- Jones, L., Hastings, R. P., Totsika, V., Keane, L., & Rhule, N. (2014). Child behavior problems and parental well-being in families of children with autism: The mediating role of mindfulness and acceptance. American Journal on Intellectual and Developmental Disabilities, 119, 171–185.CrossRefPubMedGoogle Scholar
- Meltzer, H., Gatward, R., Goodman, R., & Ford, F. (2000). Mental health of children and adolescence in Great Britain. London: HMSO.Google Scholar
- Pit-ten Cate, I. M. (2003). Family adjustment to disability and chronic illness in children. Unpublished doctoral thesis, University of Southampton.Google Scholar
- Seligman, M., & Darling, R. B. (2009). Ordinary families, special children: A systems approach to childhood disability. New York, NY: The Guilford Press.Google Scholar
- Totsika, V., Hastings, R. P., Emerson, E., Lancaster, G. A., & Berridge, D. M. (2011b). A population-based investigation of behavioural and emotional problems and maternal mental health: Associations with autism and intellectual disability. Journal of Child Psychology and Psychiatry, 52, 91–99.CrossRefPubMedGoogle Scholar