Activities that girls and women with Rett syndrome liked or did not like to do

Abstract

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.

Method: 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.

Conclusion: 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.

Keywords:

• Activities of daily living
• human activities
• human development
• neurodevelopmental disorders
• qualitative research

Funding

This study was funded by research grants from the Folke Bernadotte Foundation, Stockholm [SEK 9 000,00].

Disclosure statement

The authors report no conflicts of interests. The authors alone are responsible for the content and writing of the paper.