Patients in a persistent vegetative state: Caregiver attitudes and reactions

Objectives - This exploratory study investigated the problems encountered by caregivers of long-stay hospital patients in a persistent vegetative state. Material and methods - Sixteen primary caregivers completed questionnaires designed to assess their personality, psychophysical distress, coping strategies and caregiving-related problems. Results - Males showed a higher level of emotional distress and neuroticism than females. All of the caregivers used situation-oriented coping strategies less over time, had apparently unsatisfactory family relationships, and their emotional distress increased with disease duration. The thoughts of the possible death of the patient were associated with anxiety and depressive symptoms. The caregivers' everyday lives were characterized by limited social relationships, and indoor and outdoor interests. Conclusion - Our study underlines the importance of psychosocially assessing PVS patient caregivers, who are often alone in coping with a irreversible situation. It also introduces a questionnaire (FSQ2) that seems to be sufficient to assess the caregiving-related problems.