title: Change over a 16-month period in the psychological well-being of mothers of girls and women with Rett syndrome.
abstract: OBJECTIVE
  There is an emerging research literature on the experiences of family members of girls and women with Rett syndrome (RTT), but a lack of longitudinal data.
  
  
  METHODS
  Fifty mothers whose daughters had RTT were surveyed 16-17 months after an earlier cross-sectional study. Measures completed at both time points focused on maternal positive and negative psychological well-being and their daughters' behavioral and emotional problems and RTT behavioral phenotype severity.
  
  
  RESULTS
  Maternal stress, anxiety, and depression demonstrated at least moderate levels of stability. Maternal positive perceptions were also moderately stable over 16-17 months. Longitudinal analyses suggested that their daughters' behavioral and emotional problems rather than RTT behavioral phenotype severity predicted later maternal well-being.
  
  
  CONCLUSIONS
  Mothers with RTT daughters experience chronic stress (persisting over time) but also ongoing positive perceptions. Practitioners should recognize positive perceptions and also consider targeted behavioral parent training to reduce behavior problems in individuals with RTT.
authors.affiliation: a Welsh Centre for Learning Disabilities, Institute of Psychological Medicine and Clinical Neurosciences , Cardiff University , Cardiff , UK.
authors.forename: Rina
authors.initials: R
authors.lastname: Cianfaglione
authors.affiliation: b Centre for Educational Development Appraisal and Research , University of Warwick , Coventry , UK.
authors.forename: Richard P
authors.initials: RP
authors.lastname: Hastings
authors.affiliation: a Welsh Centre for Learning Disabilities, Institute of Psychological Medicine and Clinical Neurosciences , Cardiff University , Cardiff , UK.
authors.forename: David
authors.initials: D
authors.lastname: Felce
authors.affiliation: c Institute of Cancer and Genetics , Cardiff University, Institute of Medical Genetics Building , Heath Park, Cardiff , UK.
authors.forename: Angus
authors.initials: A
authors.lastname: Clarke
authors.affiliation: a Welsh Centre for Learning Disabilities, Institute of Psychological Medicine and Clinical Neurosciences , Cardiff University , Cardiff , UK.
authors.forename: Michael P
authors.initials: MP
authors.lastname: Kerr
mesh_terms: D000293:Adolescent; D000328:Adult; D002648:Child; D005260:Female; D006801:Humans; D008875:Middle Aged; D009035:Mothers / Q000523:psychology*; D015518:Rett Syndrome / Q000523:psychology*; D013315:Stress, Psychological / Q000453:epidemiology* / Q000523:psychology; D011795:Surveys and Questionnaires
keywords: Developmental behavior checklist; Rett Syndrome Behaviour Questionnaire; family research; longitudinal design; maternal depression