Quality of life of primary caregivers of patients in a vegetative state receiving home enteral nutrition

Objective: To investigate the health-related quality of life and psychological well-being of caregivers of patients in a permanent vegetative state receiving home enteral nutrition, and to identify factors influencing their physical and psychological burden. Patients and methods: Primary caregivers (N = 84) of patients in a vegetative state completed several questionnaires at home. The caregivers’ sociodemographic characteristics (age, sex), caregiving contextual variables (amount of external help), objective stressors (environmental changes necessary to set up home enteral nutrition), subjectively perceived stress in managing the therapy, health-related quality of life, and psychological well-being were all assessed. Results: The caregivers’ health-related quality of life did not differ from that of the Italian population. The caregivers showed their satisfaction with the provision of home enteral nutrition and the constant support received to manage it. The most frequently reported advantages of home enteral nutrition were its friendly use and its unique role for the patient’s health and well-being. However, depression, anxiety, and psychosomatic symptoms were frequently found in caregivers. Conclusions: Once home care is well organized, it is important to provide psychological support to target the caregivers’ psychological suffering and distress induced by assisting their severely disabled relatives.