title: Parental perspectives on the communication abilities of their daughters with Rett syndrome.
abstract: OBJECTIVE
  This study describes, from the perspective of parents, how females with Rett syndrome communicate in everyday life and the barriers and facilitators to successful communication.
  
  
  METHODS
  Sixteen interviews were conducted with parents with a daughter with Rett syndrome with a pathogenic mutation in the methyl-CpG-binding protein 2 gene. Interviews were recorded and transcribed verbatim. Transcripts were analysed using directed content analysis.
  
  
  RESULTS
  All parents reported their daughters were able to express discomfort and pleasure, and make requests and choices using a variety of modalities including vocalisations, body movements and eye gaze. Parents also reported their daughters understood most of what they said and that the level of functional abilities, such as mobility, and environmental factors, such as characteristics of the communication partner, influenced successful communication.
  
  
  CONCLUSIONS
  The perspectives of parents are integral to the assessment of communication abilities and have the potential to inform communication interventions for girls and women with Rett syndrome.
authors.affiliation: a Telethon Institute for Child Health Research, The University of Western Australia , Perth , WA , Australia .|b School of Exercise and Health Sciences, Edith Cowan University , Perth , WA , Australia .
authors.forename: Anna
authors.initials: A
authors.lastname: Urbanowicz
authors.affiliation: a Telethon Institute for Child Health Research, The University of Western Australia , Perth , WA , Australia .
authors.forename: Helen
authors.initials: H
authors.lastname: Leonard
authors.affiliation: c School of Occupational Therapy and Social Work, Centre for Research into Disability and Society, Curtin University , Perth , WA , Australia .
authors.forename: Sonya
authors.initials: S
authors.lastname: Girdler
authors.affiliation: d School of Psychology and Social Science, Edith Cowan University , Perth , WA , Australia , and.
authors.forename: Natalie
authors.initials: N
authors.lastname: Ciccone
authors.affiliation: a Telethon Institute for Child Health Research, The University of Western Australia , Perth , WA , Australia .|e School of Physiotherapy and Exercise Science, Curtin University , Perth , WA , Australia.
authors.forename: Jenny
authors.initials: J
authors.lastname: Downs
mesh_terms: D000203:Activities of Daily Living; D000293:Adolescent; D000328:Adult; D001294:Attitude to Health; D002648:Child; D002675:Child, Preschool; D002755:Choice Behavior; D003142:Communication; D003147:Communication Disorders / Q000503:physiopathology*; D032882:Comprehension; D005260:Female; D006801:Humans; D051783:Methyl-CpG-Binding Protein 2 / Q000235:genetics; D009154:Mutation; D009633:Nonverbal Communication; D010290:Parents; D015518:Rett Syndrome / Q000235:genetics / Q000503:physiopathology*; D055815:Young Adult
chemical_list: D051783:Methyl-CpG-Binding Protein 2
keywords: Expressive communication; International Classification of Functioning; intellectual disability; receptive communication