A Swedish project for national models of TBI rehabilitation

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The Model project is a three year Swedish project initiated by patient organizations, working together with professionals to provide models for long-term individualised and coordinated rehabilitation, support and service for children and adults with TBI. The project reaches several societal areas: Rehabilitation adults, Rehabilitation children, School and leisure, Employment, Social support and service and Support functions (for example Case managers). Finally, a group is working with models for the coordination among them.

The following is a report from the group for rehabilitation, children.

In Sweden, brain/head is the body part most often injured of children seeking acute care. Concussion is the second most common reason for children needing closed hospital care, as common for girls as boys. So, TBI is a major concern in the case of milder injuries, and a serious concern in cases of more severe TBI, even though these occur more seldom.

Health care law in Sweden says that patients should be provided with good quality healthcare on equal terms for the entire population. Attention is to be taken to meet the requirements for good care. Care is to be easily accessible and meet the patient's need for continuity and safety. Children’s and families right to receive understandably information has been strengthened in recent years.

So what is the readiness for treating and supporting children with TBI? In Sweden we have the network SVERE, organizing teams working with children with ABI, providing an overview of rehabilitation services. We have ten rehabilitation programs or documents for pediatric rehabilitation after ABI, most of them on regional health care units. They vary from short to comprehensive programs, often providing clear service provision for the children reaching those clinics.

The rehabilitation programs have a high presence of written goals for rehabilitation, definition of concepts, interdisciplinary teams, timepoints for interventions, symptoms when follow-up should take place, treatment conference with parents, interventions specifically for families as well as cooperation with other units in healthcare and community.

The programs provide low level interventions for mild brain injuries, the purpose of the rehab document, research-based recommendations, differential diagnoses, specific risk groups, symptoms that lead to rehabilitation, symptoms that lead to investigation / treatment, assessing outcome in terms of quality of life, symptoms that lead to long-term follow-up, evaluation with the family, written information of coping with symptoms, information on rehab routines and written information of symptoms that should lead to resumption of contact. The majority of clinics under the regional level, working long-term, connected to community services, most often only have a readiness for children with severe injuries.

Take together, rehabilitation in Sweden is structured in terms of what appears as well functioning islands with gaps in between.

We need:

  • guidelines of how physicians should evaluate early cognitive deficits after milder injuries
  • national guidance for when children with ABI should be referred to rehabilitation
  • readiness for long-term support of children with at local habilitation services
  • a healthcare facility that can support children and adolescents with mild injuries

The Model project is now working for collaboration with national organizations with responsibility for healthcare. Preliminary recommendations from The Model projects are:

  • Review of the literature – with focus on assessment of symptoms of milder TBI, specific risk groups and an update of evidence-based treatment
  • National recommendations – going from person-bound to structural-bound services: how to assess symptoms and when to refer follow-up after mild to severe pediatric TBI
  • Recommendations should be connected to a rehabilitation program – in general for ABI, with the addition of specific subgroup intervention when supported by current evidence
  • Develop a national database for children and adolescents with traumatic brain injury to promote continuity and evaluation of health care services

Group leader
Catherine Aaro Jonsson, neuropsychologist, ph
Executive group
Ingela Kristiansen, physician
Sofia Björk, own experience of mild TBI
Christina Jacobsson, neuropsychologist

Reference group
Barbro Renström, physiotherapist
Ingrid Sjöberg, physician
Eva Nyström Cederberg, occupational therapist
Lena Falck, social worker
Sif Leijon, psychologist
Åsa Fyrberg, speech therapist, phd

2018 "A project striving for national models for TBI rehabilitation"

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