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Rett syndrome: Teenagers and young adults activities, usage of time and responses during an ordinary week - a diary study
Linköpings universitet, Institutionen för samhälls- och välfärdsstudier, Avdelningen för arbetsterapi. Linköpings universitet, Medicinska fakulteten. Swedish Natl Ctr Rett Syndrome & Related Disorder, Sweden.
Linköpings universitet, Institutionen för hälsa, medicin och vård, Avdelningen för prevention, rehabilitering och nära vård. Linköpings universitet, Medicinska fakulteten. Stockholm Univ, Sweden.ORCID-id: 0000-0003-1281-6392
Linköpings universitet, Institutionen för hälsa, medicin och vård, Avdelningen för prevention, rehabilitering och nära vård. Linköpings universitet, Medicinska fakulteten.ORCID-id: 0000-0002-1545-3876
Swedish Natl Ctr Rett Syndrome & Related Disorder, Sweden.
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2020 (Engelska)Ingår i: Scandinavian Journal of Occupational Therapy, ISSN 1103-8128, E-ISSN 1651-2014, Vol. 27, nr 5, s. 323-335Artikel, forskningsöversikt (Refereegranskat) Published
Abstract [en]

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.

Ort, förlag, år, upplaga, sidor
TAYLOR & FRANCIS LTD , 2020. Vol. 27, nr 5, s. 323-335
Nyckelord [en]
Activities of daily living; neurodevelopmental disorders; time-geographical diary method; activity pattern; occupational therapy
Nationell ämneskategori
Arbetsterapi
Identifikatorer
URN: urn:nbn:se:liu:diva-168175DOI: 10.1080/11038128.2018.1545046ISI: 000547079800002PubMedID: 30663472OAI: oai:DiVA.org:liu-168175DiVA, id: diva2:1460276
Tillgänglig från: 2020-08-23 Skapad: 2020-08-23 Senast uppdaterad: 2021-05-01

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Sernheim, Åsa-Sara

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Sernheim, Åsa-SaraHemmingsson, HelenaLidström, HeleneLiedberg, Gunilla
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Avdelningen för arbetsterapiMedicinska fakultetenAvdelningen för prevention, rehabilitering och nära vård
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