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Activities that girls and women with Rett syndrome liked or did ot like to do
Linköping University, Department of Social and Welfare Studies, Division of Occupational Therapy. Linköping University, Faculty of Medicine and Health Sciences. Swedish National Rett Center, Östersund.
Linköping University, Department of Social and Welfare Studies, Division of Occupational Therapy. Linköping University, Faculty of Medicine and Health Sciences.
Swedish National Rett Center, Östersund.
Linköping University, Department of Social and Welfare Studies, Division of Occupational Therapy. Linköping University, Faculty of Medicine and Health Sciences.
2018 (English)In: Scandinavian Journal of Occupational Therapy, ISSN 1103-8128, E-ISSN 1651-2014, Vol. 25, no 4, p. 267-277Article in journal (Refereed) Published
Abstract [en]

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.

Place, publisher, year, edition, pages
Taylor & Francis, 2018. Vol. 25, no 4, p. 267-277
Keywords [en]
Activities of daily living, human activities, human development, neurodevelopmental disorders, qualitative research
National Category
Health Sciences
Identifiers
URN: urn:nbn:se:liu:diva-136247DOI: 10.1080/11038128.2016.1250812ISI: 000436878200005PubMedID: 27817243Scopus ID: 2-s2.0-84994304785OAI: oai:DiVA.org:liu-136247DiVA, id: diva2:1086424
Available from: 2017-04-03 Created: 2017-04-03 Last updated: 2018-07-26Bibliographically approved
In thesis
1. Time for Activities for Girls and Women with Rett Syndrome
Open this publication in new window or tab >>Time for Activities for Girls and Women with Rett Syndrome
2018 (English)Licentiate thesis, comprehensive summary (Other academic)
Abstract [en]

Irrespective of the great individual variation, people diagnosed with RTT largely rely on support from others to be able to do and participate in activities throughout their lives. This thesis focuses on which activities are done and liked/disliked by girls and women with RTT in Sweden. The overall aim was to describe the everyday lives of female individuals with Rett syndrome.

Two studies are included in this thesis. The first is a descriptive study, using secondary data from three earlier questionnaires, encompassing data from 175 participants (girls/women) described by 365 informants (parents/staff). Content analysis was used to analyse the openended questions. In the second study a Time-geographic diary method and the software VISUAL-TimePAcTs computer program, DAILY LIFE 2011 were used. Ten participants (teenagers/young female adults) with RTT and their 63 informants participated in the diary study.

The main findings in the first study (I) were that the girls and women with RTT enjoyed activities that included aspects of ‘contact’, ‘sensory impression’ and ‘motion’. The activities most enjoyed over the years were bathing/swimming, listening to music or being outdoors/walking. The parents and staff also liked to do the same activities that the girls or women enjoyed doing, described as sharing their joy. Of the few activities that were reported as being unenjoyable, most were daily care activities.

The diary study (II) showed that the most frequently reported activities were hygiene/toilet, moving around indoors, eating and getting dressed. Most time was spent in sleeping, daily care, medical and health care activities and also for travel/transportation. Little time remained for other kinds of activities especially for the young adults. Most time was spent with staff, thereafter with families, and the least time was spent with friends. The participant response that was reported most often during activities was ‘interested’, while ‘opposed’ was the least reported. Responses of ‘opposition’ were primarily seen during caring activities such as toileting, using the breathing mask, stretching, brushing teeth, being woken up, dressing and putting on orthoses. Responses of ‘engagement’ were noted in contexts of socialising, playing and communicating activities with friends or staff. Engagement responses were also reported during activities of ‘motion’ such as changing body position, moving in the water or gymnastics, eating food and snacks, and even when watching/listening to films, books or music.

Thus, increased knowledge concerning the importance of activities for girls and women with RTT is essential for their well-being, participation and continued development. Increased knowledge could facilitate the choice of activities and a more varied use of activities. Regardless of age, severity of symptoms or developed skills, it is important that not only basic needs such as sleep, daily care and medical health care activities are fulfilled for individuals with Rett syndrome. It is also essential for them to spend time with friends, family and staff doing enjoyable activities both at home and in other places. 

Place, publisher, year, edition, pages
Linköping: Linköping University Electronic Press, 2018. p. 52
Series
Linköping Studies in Health Sciences. Thesis, ISSN 1100-6013 ; 133
Keywords
Activities of daily living, activity patterns, neurodevelopmental disorder, occupation, occupational therapy, Rett syndrome, time-geographical diary method, time use.
National Category
Occupational Therapy
Identifiers
urn:nbn:se:liu:diva-149823 (URN)10.3384/lic.diva-149823 (DOI)9789176852323 (ISBN)
Presentation
2018-09-05, K3, Kåkenhus, Campus Norrköping, Norrköping, 09:30 (Swedish)
Opponent
Supervisors
Note

Funding:

Linnéa and Josef Carlsson’s Foundation, Helsingborg, Sweden and the Folke Bernadotte Foundation, Stockholm, Sweden.

Available from: 2018-07-26 Created: 2018-07-26 Last updated: 2018-07-30Bibliographically approved

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Sernheim, Åsa-SaraHemmingsson, HelenaLiedberg, Gunilla

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