Activities that girls and women with Rett syndrome liked or did not like to do.
OBJECTIVE
Activities occur in all people's lives. This study investigated over a period of time, 15 years, what activities were enjoyed or not enjoyed and what activities parents and staff liked to do with girls/women with Rett syndrome.


METHODS
A descriptive study was conducted using secondary data from three earlier questionnaires at the Swedish National Rett Center. The first questionnaire provided data on 123 girls/women with Rett syndrome, the second on 52 and the third questionnaire, on 39. Informants were parents and/or staff, in total 365. Open-ended questions were analysed using a content analysis approach.


RESULTS
Three categories appeared: Being in motion, receiving impressions and having contact. Bathing/swimming, listening to music and being outdoors/walking were the most enjoyed activities over the years. Of the few activities that were reported as being unenjoyable, most were daily care activities. The activities that the parents/staff enjoyed doing with the girls/women were similar to those the girls/women themselves liked to do.


CONCLUSIONS
A preliminary overview for both liked and disliked activities of girls/women with Rett syndrome was presented. This knowledge could facilitate the choice and use of activities.
a Department of Social and Welfare Studies, Faculty of Medicine and Health Sciences , Linköping University , Linköping , Sweden.|b Swedish National Rett Center , Östersund , Sweden.
Åsa-Sara
ÅS
Sernheim
a Department of Social and Welfare Studies, Faculty of Medicine and Health Sciences , Linköping University , Linköping , Sweden.
Helena
H
Hemmingsson
b Swedish National Rett Center , Östersund , Sweden.
Ingegerd
I
Witt Engerström
a Department of Social and Welfare Studies, Faculty of Medicine and Health Sciences , Linköping University , Linköping , Sweden.
Gunilla
G
Liedberg
D000203:Activities of Daily Living / Q000523:psychology*; D000293:Adolescent; D000328:Adult; D002648:Child; D005260:Female; D006801:Humans; D007899:Leisure Activities / Q000523:psychology*; D010290:Parents; D015518:Rett Syndrome / Q000523:psychology* / Q000534:rehabilitation*; D012944:Social Support; D011795:Surveys and Questionnaires; D013548:Sweden; D016138:Walking
Activities of daily living; human activities; human development; neurodevelopmental disorders; qualitative research