title: Family burden after severe brain injury: the Italian experience with families and volunteer associations.
abstract: 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.
authors.affiliation: Mario Negri Institute for Pharmacological Research, Milan, Italy. paola.mosconi@marionegri.it
authors.forename: Paola
authors.initials: P
authors.lastname: Mosconi
authors.forename: Mariangela
authors.initials: M
authors.lastname: Taricco
authors.forename: Mirna
authors.initials: M
authors.lastname: Bergamini
authors.forename: Luisella
authors.initials: L
authors.lastname: Bosisio Fazzi
authors.forename: Cinzia
authors.initials: C
authors.lastname: Colombo
authors.forename: Valentina
authors.initials: V
authors.lastname: Patrucco
authors.forename: Marinella
authors.initials: M
authors.lastname: Corti
authors.forename: Dario
authors.initials: D
authors.lastname: Giobbe
authors.forename: Massimo
authors.initials: M
authors.lastname: Guerreschi
authors.forename: Maria Rita
authors.initials: MR
authors.lastname: Magnarella
authors.forename: Giovanni
authors.initials: G
authors.lastname: Sallemi
mesh_terms: D000328:Adult; D001930:Brain Injuries / Q000534:rehabilitation*; D003266:Continuity of Patient Care / Q000458:organization & administration*; D005190:Family; D005260:Female; D006266:Health Education / Q000458:organization & administration; D006801:Humans; D007558:Italy; D008297:Male; D008875:Middle Aged; D010351:Patient Discharge; D012944:Social Support; D012947:Social Work / Q000458:organization & administration*; D011795:Surveys and Questionnaires; D015599:Trauma Severity Indices; D014838:Volunteers / Q000458:organization & administration*