Journal of Clinical Psychology in Medical Settings

, Volume 21, Issue 3, pp 214–222

Caregiving for Patients in Vegetative and Minimally Conscious States: Perceived Burden as a Mediator in Caregivers’ Expression of Needs and Symptoms of Depression and Anxiety

  • M. Pagani
  • A. M. Giovannetti
  • V. Covelli
  • D. Sattin
  • M. Leonardi
Article

Abstract

Involvement of family members is crucial to provide daily informal caring to patients in vegetative state and minimally conscious state. Previous studies showed that perceived burden is a risk factor for informal caregivers as it increases psychophysical distress. This research further investigated the relationship between these factors and aimed at providing a model that thoroughly describes this mechanism of functioning. In the frame of a national survey on people with disorders of consciousness, 487 informal caregivers of children and adult patients in vegetative and minimally conscious state were administered measures of depression, anxiety, caregiver needs, and family strain. Regression models proposed by Baron and Kenny and the Sobel test were adopted to investigate the relationship between depressive and anxiety symptoms, perceived burden and needs expressed. Our study shows that the relation between those symptoms and needs is mediated by burden, where higher burden accentuates and lower burden mitigates the needs expressed by caregivers. Our findings demonstrate that psychosocial components of the burden perceived by caregivers of patients with disorders of consciousness play a key role in shaping those caregivers’ needs, especially their needs for information and communication. We recommend implementation of comprehensive steps to meet the needs of these caregivers, steps that incorporate improved economic and public health programs, social support, and use of psychological interventions to ameliorate caregivers’ psychological distress and decrease their burden.

Keywords

Informal caregivers Vegetative state Minimally conscious state Burden Needs Depression Anxiety 

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Copyright information

© Springer Science+Business Media New York 2014

Authors and Affiliations

  • M. Pagani
    • 1
  • A. M. Giovannetti
    • 1
  • V. Covelli
    • 1
  • D. Sattin
    • 1
  • M. Leonardi
    • 1
  1. 1.Neurology, Public Health and Disability Unit, Scientific DirectorateNeurological Institute Carlo Besta IRCCS FoundationMilanItaly

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