The experiences of the caregivers caring for the patients in persistent vegetative state due to traumatic brain injury

Abstract

Objective: Persistent vegetative state often occurs as a result of traumatic brain injuries; these patients are usually hospitalized for sustained periods, and the family caregivers are the main care providers in Iranian hospitals, especially for chronic and persistent vegetative state patients. The current study was conducted to investigate the family caregivers’ experiences of caring for persistent vegetative state patients following traumatic brain injury. Methods: This descriptive phenomenological study was carried out in 2019. Semi-structured interviews were done with 12 family caregivers caring for the patients in persistent vegetative state, hospitalized in a trauma center, after taking informed written consent and assuring about anonymity and confidentiality of their personal information. The interviews were analyzed using the Colaizzis҆ method. Results: After analysis of 12 interviews, 5 themes, and 10 subthemes were extracted from 428 codes. Five themes include “uncountable struggles/challenges,” “looking for peace,” “therapeutic concerns,” “preserving the connection,” and “unheard sounds.” Conclusion: In this study, the family caregivers of the persistent vegetative state patients in the hospital experienced some challenges, and looked for peace by doing some work, for example, praying. They had some therapeutic concerns and unheard sounds and tried to fulfill them. We recommend, by using the results of this study and other related research, necessary care and facilities would be provided for the family caregivers of persistent vegetative state patients in hospitals.