Redolfi Alessandra, Gugliotta Maria, Borsotti Marco, D'Amato Antonello, Gemignani Paola, Maietti Alessandra, Mezzanato Tiziana, Sapienza Sabrina, Trimarchi Pietro Davide, Negrini Stefano, Mazzucchi Anna
IRCCS Santa Maria Nascente, Fondazione Don Gnocchi Onlus, Milan, Italy.
Dipartimento di Medicina Clinica e Sperimentale, Università degli Studi di Parma, Parma, Italy.
Ann Ist Super Sanita. 2017 Jul-Sep;53(3):253-265. doi: 10.4415/ANN_17_03_12.
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.
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.
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.
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.
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.
重度后天性脑损伤患者需要复杂的长期多学科医疗保健和社会福利项目，他们的家庭会经历社会和情感方面的后果，这些后果深刻影响着他们的生活质量。
调查获得当地康复及其他服务的可能性是否不仅对患者的生活质量有积极影响，而且对其家庭的生活质量也有积极影响。
样本包括536名重度后天性脑损伤患者的家庭。他们接受了一份包含50个项目的特定问卷，问卷答案包括多项选择题、二分法（是/否）答案或基于李克特量表的答案。
结果表明，为患者提供的长期服务总体上令人满意，但有关患者社会和工作重新融入的数据却令人不安。此外，无论激活的康复服务数量和质量如何，或获得的福利支持金额多少，家庭都因经济、情感和护理负担而经历深刻的社会不适。
地方层面提供的重度后天性脑损伤后服务不仅应包括对患者的长期康复和社会支持，还应包括对其家庭的长期社会和心理支持。
