Long-term services for the care and rehabilitation of people with severe acquired brain injury: a multicentre, cross-sectional study of 536 Italian families

BACKGROUND: People with severe acquired brain injuries (ABIs) require complex, long-term multidisciplinary healthcare, and social welfare programmes, and their families experience social and emotional consequences that profoundly condition their quality of life.OBJECTIVE: To investigate whether the possibility of gaining access to local rehabilitation and other services positively influences not only the quality of life of the patients but also the quality of life of their families.METHODS: The sample consisted of 536 families of patients with severe ABIs. They were administered a specific 50-item questionnaire with a mix of multiple choice answers, dichotomous (yes/no) answers, or answers based on a Likert-type scale.RESULTS: The results suggest that the long-term services provided to patients are substantially satisfactory but the data concerning the patients' social and working reintegration are discomforting. Furthermore, the families experience profound social discomfort related to their economic, emotional and caregiving burden regardless of the number and quality of the rehabilitation services activated, or the amount of welfare support received.CONCLUSIONS: Post-severe ABI services provided at a local level should include not only long-term rehabilitative and social support for the patients, but also long-term social and psychological support for their families.