Burden of caregivers of patients in Vegetative state and minimally conscious state

Abstract

Objectives: To assess differences in the burden of caregivers of patients in Vegetative state (VS) and minimally conscious state (MCS).

Materials and methods: 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.

Results: 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).

Conclusions: 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.