Rett syndrome: Teenagers' and young adults' activities, usage of time and responses during an ordinary week - a diary study.

Background: Little is known about the everyday life of individuals with Rett syndrome.Aim/Objective: To describe ten participants' (teenagers/young adults) activities during a period of seven days, the time-use, where and with whom the activities were performed and the participants' responses in the form of visible/audible reactions during activities.Material and method: A time-geographic self-administered diary was filled in by 63 informants (parents/support staff) and analysed using the software, DAILY LIFE 2011.Results/Findings: The most frequently reported activities were hygiene/toilet, moving around indoors, eating and getting dressed. Most time was spent in sleeping, daily care, medical health care and travel/transportation. Little time remained for receptive activities, daytime rest, physical, social/creative, communication, school/daily work and domestic chore activities, especially for the young adults. Most time was spent with staff, thereafter with families and the least time was spent with friends. The most reported response was "interested", and "opposed" was the least reported.Conclusions: Daily and medical health care activities were time consuming. Improved communication between all parties may increase participation and well-being and provide solutions for handling unpleasant activities and sedentary time.Significance: A more varied range of activities may improve the everyday life for individuals with Rett syndrome.

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. 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.