Aim: With this study we wanted to verify whether the same uneasiness elements as those described by numerous previous studies also existed in an Italian sample of traumatic brain-injured (TBI) patients.
Methods: A follow-up investigation was conducted on a sample of 16 subjects who had suffered severe TBI 5 to 10 years earlier. Based on series of neuropsychological tests, the patients' levels of remaining autonomous function were assessed. For each patient, a family reference person was identified with a semistructured interview to define how they dealt with the consequences of the trauma within the familial nucleus, what motivated their choices, the social outcome of the familial nucleus, the behavioral outcome, and the social- and work-related outcomes of the patient. The caregiver's current emotions were also analyzed.
Results: The study results confirmed that the family felt isolated from the social groups it used to belong to, and that few patients had fully achieved reinsertion into their social and/or work environments. Only 50% of subjects had returned to their job, most of them finding work at a lower level. The closest relatives reported experiencing a state of hardship. Many (70%) care-givers expressed by a steady feeling of worry but had devised effective compensatory strategies over the course of the study period to deal with depression. Such compensation appeared to be the result of the care-givers' awareness of the need to cope with situations where the patients very often depended on them. The hardship level the patient's familial nucleus experienced was not correlated with the patient's social- and work-related outcome, and elements of difficulty were evident among the relatives of patients who had returned to a productive life and those who were close to the family. The presence of severe cognitive and/or behavioral disability was a major factor in generating concern and worry about the future. In cases where the patient was severely disabled, the happiness level perceived by the patient's relatives, as expressed on a 5-point Likert scale, was 2.1, whilst in cases where disability was absent the level was 3.5.
Conclusions: Our observations confirm evidence from previous studies that even many years after a severe trauma incident, a state of disability and/or hardship involving the entire familial nucleus persists.