Multidisciplinary research network on health and disability training on the International Classification of Functioning, Disability and Health, Ethics, and Human Rights.

This article provides a brief description of a training course in International Classification of Functioning (ICF), Disability and Health, Ethics and Human Rights done in the field of the European MURINET project. This course, in its three annual editions, was the product of a joint collaborative work among the Neurological Institute Carlo Besta, the Catholic University, and the National Council of Disability. The training program was formulated to provide knowledge and skills in the field of disability and in the use of ICF. The main result is that a new generation of European researchers was trained. Thanks to this specialized training program, they are now able to conduct and manage research on health and disability, applying the new concept of health and disability based on the ICF biopsychosocial model.

Family burden after severe brain injury: the Italian experience with families and volunteer associations.

BACKGROUND: As part of the development of the Italian National Consensus Conference investigating the period from the hospital rehabilitation of patients with severe brain injury to their return to the community, a working group was appointed to identify the needs of brain injury patients and their families in Italy. METHODS: Two postal self-administered survey questionnaires were carried out: one targeted families of patients with severe brain injury to evaluate their objective and subjective burdens and needs; the other focused on the viewpoints of volunteer associations helping people with severe brain injury. Issues explored were quality of discharge from hospital (information received, family participation, etc.), needs of the family (work, financial resources, spare time, relationships with friends and other relatives), and the viewpoint of volunteer associations. RESULTS: A total of 234 families (54% of sample) of patients (69% male, mean age 41 years) with severe brain injury returned the questionnaire. Most said they had been involved and informed in the hospital discharge process; about 17% had not been involved at all and only about one-third of families received satisfactory support during the discharge phase. Few families received any help from community social services (10%). Almost two-thirds of families had experienced financial difficulties and, in many cases, one family member had to change his/her work situation. Families' social relationships, travelling, hobbies, and spare time were significantly reduced. The 57 volunteer associations who returned the survey (84% response rate) confirmed that their members had experienced the same difficulties. CONCLUSIONS: Considering the difficulties and problems documented by these two surveys, more research is needed on effective interventions to support patients with severe brain injury and their families, particularly during the discharge phase from hospital to home and community life.