Post-discharge plight of patients with chronic disorders of consciousness: A systematic review of socioeconomic and health aspects

Objective - the presented study aims to systematize and structure significant information regarding the problems of patients with disorders of consciousness (DOC) and their families after discharge from the hospital, and to search for possible solutions. Material and Methods - to identify eligible studies, we searched the Medline database (via PubMed) for studies on socioeconomic and medical issues of patients with chronic DOC at the post-hospital stage of rehabilitation for the last 20 years. Results - we included 28 studies with 21 cohorts of patients from 7 different countries in our study. The components of informal caregiver burden and their impact on the quality of life were identified and systematized. These components include high physical load, high economic costs, vast time expenditures, strong emotional involvement, and a top level of expertise in caregiving, all of which are required from the relatives. Conclusion - It was affirmed, that the lack of healthcare system support was a major contributing factor to the overall burden. Our research also showed that delivering care without receiving information, advice, and training is extremely painful for family caregivers.