Being a caregiver of a relative with a prolonged disorder of consciousness living at home: A scoping review

摘要

As recent reviews of the literature have shown, a growing number of studies have focused on the burden of caregivers of people living with a prolonged disorder of consciousness. However, none of these reviews have focused specifically on caregivers in the home care setting. It is therefore difficult to have a state of knowledge specific to this setting, even though many POCD patients live at home once their condition has stabilized. For this reason, we decided, after completing recent literature reviews, to conduct a quantitative and qualitative analysis of publications presenting data on the quality of life of caregivers whose relative with PDOC lives at home. While all the studies agree that the presence of a person with PDOC is a heavy burden for the caregiver, some authors refute the idea defended by others that this burden is the same whether the patient lives at home or in care facilities. All the studies also stress the need for public material and organisational assistance, without which caregivers find themselves in a state of great financial and psychological distress. Such support would also help to strengthen internal resilience factors.