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Psychological Well-Being of Mothers and Siblings in Families of Girls and Women with Rett Syndrome

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Abstract

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.

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Acknowledgments

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.

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Authors and Affiliations

  1. Welsh Centre for Learning Disabilities, Institute of Psychological Medicine and Clinical Neurosciences, Cardiff University, 2nd Floor Hadyn Ellis Building, Maindy Road, Cardiff, CF24 4HQ, UK

    Rina Cianfaglione, David Felce & Michael P. Kerr

  2. Centre for Educational Development Appraisal and Research (CEDAR), University of Warwick, Coventry, CV4 7AL, UK

    Richard P. Hastings

  3. Institute of Cancer and Genetics, Cardiff University, Institute of Medical Genetics Building, Heath Park, Cardiff, CF14 4XN, UK

    Angus Clarke

Authors
  1. Rina Cianfaglione
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  2. Richard P. Hastings
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  3. David Felce
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  4. Angus Clarke
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  5. Michael P. Kerr
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Correspondence to Richard P. Hastings.

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Cianfaglione, R., Hastings, R.P., Felce, D. et al. Psychological Well-Being of Mothers and Siblings in Families of Girls and Women with Rett Syndrome. J Autism Dev Disord 45, 2939–2946 (2015). https://doi.org/10.1007/s10803-015-2457-y

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  • DOI: https://doi.org/10.1007/s10803-015-2457-y

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