Activity and severe multiple disabilities due to Rett Syndrome

En äldre och en yngre kvinna sitter bredvid varandra

Rett syndrome occurs mainly in girls, and is described as a neurodevelopmental disorder. There are about 270 individuals in Sweden with a Rett syndrome diagnosis. Symptoms such as dyspraxia and a lack of control of brain stem function lead to problems in actively interpreting, participating in and understanding one’s environment.

The significance of activities for people with severe multiple functional disabilities, as in Rett syndrome, is poorly researched. Knowledge is needed about the significance of everyday activities in order for us to have a greater awareness when satisfying not just basic needs but also stimulation for joy and development in to adult life and advanced age as well. This project will contribute a greater depth of knowledge, which will have the potential to improve the daily life of these people. The new knowledge will also be applicable in direct training of staff working in this area of care.

The project is in two parts 

1. The first study consists of questionnaire material collected at the Rett Center over a number of years, and will describe the experiences of families and staff of what activities individuals with Rett syndrome enjoy doing or participating in.

2. The second study will contribute knowledge about what the activity patterns of the girls/women are during a normal day. This has involved assistants/parents keeping a diary over a period of a week, which has then been followed up in an interview to discuss the outcome.

Daily Life 2011

Grants and funding

  • Rett Center, region Jämtland Härjedalen
  • Linnéa and Josef Carlsson’s Foundation, Helsingborg
  •  The Folke Bernadotte Foundation for children and young people with physical disabilities

Data collection has been completed and
the manuscript is currently in production.



External partner