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

Abstract

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.