TY - JOUR
T1 - Family burden after severe brain injury
T2 - The Italian experience with families and volunteer associations
AU - Mosconi, Paola
AU - Taricco, Mariangela
AU - Bergamini, Mirna
AU - Fazzi, Luisella Bosisio
AU - Colombo, Cinzia
AU - Patrucco, Valentina
AU - Corti, Marinella
AU - Giobbe, Dario
AU - Guerreschi, Massimo
AU - Magnarella, Maria Rita
AU - Sallemi, Giovanni
PY - 2011
Y1 - 2011
N2 - 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; about17%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.
AB - 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; about17%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.
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U2 - 10.2165/11535550-000000000-00000
DO - 10.2165/11535550-000000000-00000
M3 - Article
C2 - 21766894
AN - SCOPUS:79951609748
SN - 1178-1653
VL - 4
SP - 55
EP - 65
JO - Patient
JF - Patient
IS - 1
ER -