The experience of family caregivers caring for a patient with chronic disorders of consciousness: a qualitative content analysis.

Background Management of a patient with chronic disorders of consciousness is a long-term and stressful situation for family caregivers. Aims The aim of this study was to describe the experiences of family caregivers of patients with chronic disorders of consciousness. Methods Purposeful sampling was used, data were collected through semi-structured, in-depth interviews at participants' homes. Data were analysed using qualitative content analysis. Findings Results indicated that family caregivers of patients with chronic disorders of consciousness face many difficulties in providing care to vegetative state (VS) and minimally conscious state (MCS) patients; they experience it as a challenging type of care, which influences their mental health. Conclusion Family caregivers are faced with many challenges because of the high burden of care, round-the-clock concern, taking care of an alive but unresponsive patient without receiving enough support. They experience mental and inner turmoil because of social isolation and dealing with contradictory feelings in their daily life.