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Communication and eating proficiency in 125 females with Rett syndrome: The Swedish Rett center survey

Purpose. To describe communication and eating proficiency and related factors in Swedish females with Rett syndrome, from a parental/caregiver view. Method. Data from a questionnaire were used and approached descriptively, qualitatively and comparatively. Parents/caregivers of 125 females with Rett syndrome completed the survey. The mean age of the females was 19.6 years. Results. Communication: expressive language was limited and the most common way of expressing will was by producing motor acts, 50% of which were higher level of language (eye- and finger-pointing and gestures). Results also showed communicative behaviour was demonstrated during social activities. Eating proficiency: For eight specific types of eating difficulties, the majority of the females suffered from none, one or two of them. There were significant associations of some specific eating difficulties with breathing dysfunctions and food consistency, but not with dental or oral problems. Conclusions. Results from this study have confirmed that verbal communication in Rett syndrome is limited. Despite a lack of verbal communication the females in this study were reported to need and enjoy social interplay. Outcomes concerning eating were generally good. For optimal intervention, it is recommended that family and professionals work together to evaluate eating situations and communication ability for females with Rett syndrome.