Burden of caregivers of patients in Vegetative State and Minimally Conscious State

Abstract

To assess differences in the burden of caregivers of patients in Vegetative state (VS) and minimally conscious state (MCS). The Family Strain Questionnaire, Coping Orientations to Problem Experiences, Caregiver Needs Assessment, Short Form-12, Beck Depression Inventory and State-Trait Anxiety Inventory were used. Differences in psychological condition between caregivers of VS and MCS patients, with different disease duration and hosting facility were assessed with Kruskall-Wallis test and factors associated with the overall levels of burden with UNIANOVA. In total, 487 participants were enrolled. Daily hours of care-giving is significantly associated with the overall level of burden perceived by caregivers (F = 4.099; P = 0.018). Strain, needs and frequency of use of coping strategies are substantially similar regardless of the patient's condition and distance from the acute event. Caregivers of post-acute patients reported low scores in mental health (median = 33.8; IQR = 23.1-47.6) and higher state of anxiety (median = 54; IQR = 45-62), whereas caregivers of long-term patients expressed more needs in social involvement (median = 19; IQR = 15-22). Burden and distress were high for all caregivers of VS and MCS patients. As care-giving is a long-term commitment process, support to the caregiver should be guaranteed throughout the duration of the relative's disease despite the patient's diagnosis or place where the patient is hosted.