The care-givers of patients with persistent vegetative state have a terrible life: the result of a qualitative study

Abstract

Background persistent vegetative state (PVS) is one of the results of traumatic brain injury. These patients are hospitalized for a long time, and need more cares. The caregivers are first members who provide care and have some challenges accordingly. With regards to a lack of information in this issue, the current study was conducted to explore Iranian care-givers experiences of caring for PVS patients following traumatic brain injury.Methods this study was conducted as a descriptive phenomenological study in 2019. Semi-structured interviews were done on caregivers of PVS in a center of trauma in Iran. The interviews were recorded and wrote verbatim, then analyzed using seven steps of Collazi with management of MAXQUDA software. Guba and Lincoln`s criteria were used in favor of rigor, including credibility, dependability, transferability, and confirmability.Results twelve people participated in the study and five themes, and ten subthemes extracted from 428 codes. The themes were "falling into tensions", "seeking peace", "imposed therapeutic duties", "preserve connection" and 'unheard sounds ".Conclusion In this study, the caregivers of PVS experienced some injuries and familial crises. They wished peace by praying and drain their feelings, also did some imposed duties, and tried to address all the needs of patient. They assessed patients' signs daily and some information gap, therefore, wanted to obtain them by relationship with staff. The caregivers communicated with patients and hoped to recovery of patients. They were complained of accommodations and lack of staff visits.