The Caregiver Burden in Patients with Chronic Disorders of Consciousness: Differences Between Long-Term Tele-Assistance System and In-Hospital Care Facilities

Abstract

: Background: There has been limited research on the mental health of those caring for individuals with chronic disorders of consciousness (DoCs), particularly in comparing caregivers of patients managed at home versus those admitted to Long-Term Care Specialized Units (LTCSUs). Methods: This prospective study assessed the psychological status of 79 caregivers of patients with chronic DoC, who were either admitted to an LTCSU with respect to those followed through a remote telemonitoring service called Oberon Service (OS). Patients' cognitive functioning and level of disability were assessed using Coma Recovery Scale-Revised, Wessex Head Injury Matrix, Nociception Coma Scale, Disability Rating Scale, and Level of Cognitive Functioning scales, whereas caregivers' psychological status was evaluated with the caregiver burden index and the Short Form Health Survey-36. Results: Patients in the two groups were similar for demographic variables, years of hospitalization, and etiology. At the clinical level, patients in the LTCSU group had a significantly higher prevalence of gastrostomy feeding, tracheostomy tube, and respiratory support compared with the OS group. Caregivers belonging to the two groups did not show substantial differences in several sociodemographic variables. At follow-up, the relationship between patient cognitive functioning and mental health differed significantly between the OS and LTCSU groups. The higher burden and lower quality of life in the OS group were particularly pronounced when patients had lower levels of cognitive functioning, whereas in the LTCSU group, an opposite effect was detected. Conclusions: Our findings underscore how patient care settings and cognitive status interact to influence caregiver burden and quality of life, highlighting the need for tailored support strategies based on care settings.