A qualitative study on perceptions of changes reported by caregivers of patients in vegetative state and minimally conscious state: the "time gap experience".

Abstract

Objective. Our purpose was to provide a comprehensive understanding of how women informal caregivers of patients in vegetative state (VS) or minimally conscious state (MCS) describe, represent, and experience changes that occurred in their life after the acute event of their family member. Methods. A qualitative study was conducted and fifteen women informal caregivers, mothers, or spouses of patients in VS or MCS were interviewed. Results. Caregivers' narratives revealed (1) important personal and interpersonal changes and (2) difficulties while facing the complex situation and integrating past, present, and future, defined as a “time gap experience.” This difficulty is expressed in two ways. First, the reduction of variety of roles into one, caregiver's role. Second, the relationship with the relative is characterised by fluctuation in the relational style between caregiver and relative; it shifts from an adult to adult interaction to an adult to child one. Another fluctuation can be observed in the mixed use of present and past tenses when caregivers speak about their relatives. Conclusions. Caregiving cause pervasive modifications in one's life. Targeted interventions aiming to empower the caregivers, to support them after the acute event in caregiving activities together with patient-focused interventions, and to promote their health should be implemented.