Background The lack of organized caretaking for persons with HD and their families in our part of Sweden was the reason for us to start our project “Network for people with HD in Western part of Sweden”. There was hardly any continues cooperation between the different medical professions, which is necessary if the persons with HD should be able to have a descent quality of life.
Aims To create guidance for professionals/users and relatives in purpose to know what is needed, when and who is going to execute the needs. Our goal was to create easy, accessible and comprehensive guidelines. Another aim was that it should be easy to use for everyone.
Methods/technique We started with collecting facts; we took part of experiences from professionals in multidisciplinary team from all parts of Sweden. In working groups we got opinions from persons with HD from their relatives/families/friends and care-suppliers. Our method was interviews, searching for facts from our working-groups during creative discussions. In the end we processed our text material into a CD production. To visualize different parts of the material we also created short film sequences.
Results/outcome A CD, ‘Huntington's disease - a practical guidance’, concerning all the needs throughout the different stages of Huntington's disease.
Conclusions Collaboration between all the participants is a necessity for building up the frames for the best possible quality of life and standard of care, concerning people with HD and their families.
Vision To translate the CD into English and other languages and make it accessible to people with HD and their families, professionals and care suppliers world wide.
- Multidisciplinary teamwork
- quality of life
- standard of care
- support young people
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