title: 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.
authors.affiliation: Neurological Institute Carlo Besta IRCCS Foundation, Neurology, Public Health and Disability Unit, Via Celoria 11, 20133 Milan, Italy.
authors.forename: Venusia
authors.identifier: 0000-0002-8993-7689
authors.initials: V
authors.lastname: Covelli
authors.affiliation: Neurological Institute Carlo Besta IRCCS Foundation, Neurology, Public Health and Disability Unit, Via Celoria 11, 20133 Milan, Italy.
authors.forename: Milda
authors.identifier: 0000-0003-1871-3650
authors.initials: M
authors.lastname: Cerniauskaite
authors.affiliation: Neurological Institute Carlo Besta IRCCS Foundation, Neurology, Public Health and Disability Unit, Via Celoria 11, 20133 Milan, Italy.
authors.forename: Matilde
authors.initials: M
authors.lastname: Leonardi
authors.affiliation: Neurological Institute Carlo Besta IRCCS Foundation, Neurology, Public Health and Disability Unit, Via Celoria 11, 20133 Milan, Italy.
authors.forename: Davide
authors.initials: D
authors.lastname: Sattin
authors.affiliation: Neurological Institute Carlo Besta IRCCS Foundation, Neurology, Public Health and Disability Unit, Via Celoria 11, 20133 Milan, Italy.
authors.forename: Alberto
authors.identifier: 0000-0002-7433-7779
authors.initials: A
authors.lastname: Raggi
authors.affiliation: Neurological Institute Carlo Besta IRCCS Foundation, Neurology, Public Health and Disability Unit, Via Celoria 11, 20133 Milan, Italy.
authors.forename: Ambra Mara
authors.initials: AM
authors.lastname: Giovannetti
mesh_terms: D000328:Adult; D000368:Aged; D017028:Caregivers / Q000523:psychology*; D005260:Female; D006801:Humans; D008297:Male; D008875:Middle Aged; D010290:Parents / Q000523:psychology*; D018458:Persistent Vegetative State / Q000503:physiopathology*; D036301:Qualitative Research; D011788:Quality of Life / Q000523:psychology; D018454:Spouses / Q000523:psychology*; D013315:Stress, Psychological / Q000503:physiopathology*; D011795:Surveys and Questionnaires; D013998:Time Perception