Communication and eating proficiency in 125 females with Rett syndrome: The Swedish Rett Center Survey.
OBJECTIVE
To describe communication and eating proficiency and related factors in Swedish females with Rett syndrome, from a parental/caregiver view.


METHODS
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.
Lavås
Jennie
J
Division of Speech Pathology, Department of Clinical Sciences, Umeå University, 901 85 Umeå, Sweden.
Slotte
Annika
A
Jochym-Nygren
Magdalena
M
van Doorn
Jan
J
Engerström
Ingegerd Witt
IW
D000203:Activities of Daily Living; D000293:Adolescent; D000328:Adult; D002648:Child; D002675:Child, Preschool; D003142:Communication; D003143:Communication Devices for People with Disabilities; D004435:Eating; D005260:Female; D006306:Health Surveys; D006801:Humans; D008875:Middle Aged; D016017:Odds Ratio; D012120:Respiration Disorders / Q000209:etiology; D015518:Rett Syndrome / Q000150:complications / Q000503:physiopathology; D011795:Surveys and Questionnaires; D013548:Sweden; D013647:Task Performance and Analysis