Personal and interpersonal changes in caregivers of patients in Vegetative State or Minimally Conscious State: a qualitative study

There are few studies on caregivers of patients in Vegetative State (VS) or Minimally Conscious State (MCS) which findings show high level of burden and worse general health of caregivers of these patients. To bring a better understanding about how caregivers themselves view and perceive their role and changes in family relationships after acute event a qualitative study was conducted.
Fifteen caregivers of adult patients in VS or MCS were interviewed and main contents related to caregivers burden emerged.
Caregivers reported some psychological difficulties and problems in integrating past and present inner representation of the patient: confusing past with present tense describing the patient and switching from ‘’adult-adult’’ to ‘’adult-child’’ attitude to the patient. They also reported actively avoiding thoughts about the future.
Needs expressed by caregivers were mainly related to the patient: care-giving was the main role of their life. However, they reported to find new personal resources to deal with this situation.
This study brings a better understanding about changes in family relationships and caregivers role in life. Targeted interventions aiming to empower their capabilities and personal new abilities, and to support a better integration between past and present, may be useful to promote their health.