I am research group leader of this operationally proximate project at Akademiska barnsjukhuset in Uppsala (Uppsala University Paediatric Hospital). The aim of the study is to investigate what needs and difficulties children and young people with acquired brain injuries in the Uppsala-Örebro health care region, and their families, experienced when at least a year had passed since the diagnosis, and also to catalogue what difficulties they had in connection with the discharge following the initial period of hospital care.

A further aim is to study the children’s activities and participation during leisure time, in school and in the community, as well as what support, intervention and adaptation needs their families felt that the children had at the time of the study, i.e. within a period of 1-3 years after being discharged, according to the Child & Family Follow-up Survey (CFFS) instrument.

The goal of the project is to produce a model for interdisciplinary, long term rehabilitation for children and young people with acquired brain injuries, and their families, on the basis of perceived needs. An additional goal is to promote the health and quality of life of the children and their families. The study is being carried out in collaboration with the Folke Bernadotte Regional Rehabilitation Centre in Uppsala, Uppsala University Paediatric Hospital, and the Department of Women’s and Children’s Health at Uppsala University.

Funding is being provided by Linnéa and Josef Carlsson’s Foundation, Uppsala County’s targeted R&D grants, and ALF grants via the Swedish Research Council.

As of 2016, there will be collaboration with the Model project: Models for lifelong, personally adapted rehabilitation, support and service for people with traumatic brain injury. The purpose of the project is to improve opportunities for people with traumatic brain injury to have access to long-term, personally adapted rehabilitation, support and service that contribute to good quality of life and the possibility to be involved in society in the same way as other citizens.

The project work will be executed by eight process groups. I will be the process manager of the group working with support for children in school and outside school.

The Model project/Modellprojektet