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


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.


Informal caregivers Vegetative state Minimally conscious state Burden Needs Depression Anxiety 


  1. Baron, R. M., & Kenny, D. A. (1986). The moderator-mediator variable distinction in social psychological research: conceptual, strategic, and statistical considerations. Journal of Personality and Social Psychology, 51, 1173–1182.PubMedCrossRefGoogle Scholar
  2. Bialon, L. N., & Coke, S. (2012). A study on caregiver burden: stressors, challenges, and possible solutions. American Journal of Hospice and Palliative Care, 29, 210–218.PubMedCrossRefGoogle Scholar
  3. Bonnaud-Antignac, A., Hardouin, J. B., Leger, J., Dravet, F., & Sebille, V. (2012). Quality of life and coping of women treated for breast cancer and their caregiver. What are the interactions? Journal of Clinical Psychology in Medical Settings, 19, 320–328.PubMedCrossRefGoogle Scholar
  4. Chiambretto, P., & Vanoli, D. (2006). Family reactions to the vegetative state: a follow-up after 5 years. Giornale Italiano di Medicina del Lavoro ed Ergonomia, 28, 15–21.PubMedGoogle Scholar
  5. Cooper, D. J., Rosenfeld, J. V., Muray, L., Arabi, Y. M., Davies, A. R., D’Urso, P., … Wolfe R. (2011). Decompressive craniectomy in diffuse traumatic brain injury. The New England Journal of Medicine, 364, 1493–1502.PubMedCrossRefGoogle Scholar
  6. Daubin, C., Quentin, C., Allouche, S., Etard, O., Gaillard, C., Seguin, A., … du Cheyron D. (2011). Serum neuron-specific enolase as predictor of outcome in comatose cardiac-arrest survivors: A prospective cohort study. BMC Cardiovascular Disorders, 8, 11–48.Google Scholar
  7. Engel, G. L. (1977). The need for a new medical model: A challenge for biomedicine. Science, 8, 129–136.CrossRefGoogle Scholar
  8. Ghisi, M., Flebus, G. B., Montano, A., Sanavio, E., & Sica, C. (2006). Beck Depression Inventory II. Italian Version. 2006. Firenze: Editore Giunti O.S.Google Scholar
  9. Giacino, J. T., Ashwal, S., Childs, N., Cranford, R., Jennett, B., Katz, D. I., … Zasler, N. D.. (2002). The minimally conscious state: Definition and diagnostic criteria. Neurology, 58, 349–353.PubMedCrossRefGoogle Scholar
  10. Giovannetti, A. M., Leonardi, M., Pagani, M., Sattin, D., & Raggi, A. (2012). Burden of caregivers of patients in vegetative state and minimally conscious state. Acta Neurologica Scandinavica, 127, 10–18.PubMedCrossRefGoogle Scholar
  11. Giovannetti, A. M., Pagani, M., Sattin, D., Covelli, V., Raggi, A., Strazzer, S., … Leonardi, M.. (2012). Children in vegetative state and minimally conscious state: patients’ condition and caregivers’ burden. The Scientific World Journal, 2012, 232149.PubMedCentralCrossRefGoogle Scholar
  12. Gustavsson, A., Svensson, M., Jacobi, F., Allgulander, C., Alonso, J., Beghi, E., … Olesen, J.. (2011). Cost of disorders of the brain in Europe. Journal of European Neuropsychopharmacology, 21, 718–779.CrossRefGoogle Scholar
  13. Kendall, E., & Terry, D. (2009). Predicting emotional well-being following traumatic brain injury: a test of mediated and moderated models. Social Science and Medicine, 69, 947–954.PubMedCrossRefGoogle Scholar
  14. Leonardi, M., Giovannetti, A. M., Pagani, M., Raggi, A., Sattin, D., & On Behalf Of The National Consortium Functioning And Disability In Vegetative And In Minimal Conscious State Patients. (2012). Burden and needs of 487 caregivers of patients in vegetative state and in minimally conscious state: Results from a national study. Brain Injury, 26, 1201–1210.PubMedCrossRefGoogle Scholar
  15. Leonardi, M., Pagani, M., Giovannetti, A. M., Raggi, A., & Sattin, D. (2013). Burnout in healthcare professionals working with patients with disorders of consciousness. Work, 45, 349–356.PubMedGoogle Scholar
  16. Leonardi, M., Sattin, D., Giovannetti, A. M., Pagani, M., Strazzer, S., Villa, F., … Raggi, A.. (2012). Functioning and disability of children and adolescents in a vegetative state and a minimally conscious state: identification of ICF-CY-relevant categories. International Journal of Rehabilitation Research, 35, 352–359.PubMedCrossRefGoogle Scholar
  17. Leonardi, M., Sattin, D., & Raggi, A. (2013). An Italian population study on 600 persons in vegetative state and minimally conscious state. Brain Injury, 27, 473–484.PubMedCrossRefGoogle Scholar
  18. Lippert-Grüner, M., Wedekind, C., & Klug, N. (2003). Outcome of prolonged coma following severe traumatic brain injury. Brain Injury, 17, 49–54.PubMedCrossRefGoogle Scholar
  19. MacKinnon, D. P., Lockwood, C. M., Hoffman, J. M., West, S. G., & Sheets, V. (2002). A comparison of methods to test the significance of the mediated effect. Psychological Methods, 7, 83–104.PubMedCentralPubMedCrossRefGoogle Scholar
  20. McCullagh, E., Brigstocke, G., Donaldson, N., & Kalra, L. (2005). Determinants of caregiving burden and quality of life in caregivers of stroke patients. Stroke, 36, 2181–2186.PubMedCrossRefGoogle Scholar
  21. McPherson, K. M., McNaughton, H., & Pentland, B. (2000). Information needs of families when one member has a severe brain injury. International Journal of Rehabilitation Research, 23, 295–301.PubMedCrossRefGoogle Scholar
  22. Moroni, L., Sguazzin, C., & Filipponi, L. (2008). Caregiver Need Assessment: a questionnaire for caregiver demand. Giornale Italiano di Medicina del Lavoro ed Ergonomia, 30, 84–90.Google Scholar
  23. Pagani, M., Covelli, V., Sattin, D., Giovannetti, A. M., Schiavolin, S., Meucci, P., … Leonardi, M. (2013). Elderly patients in vegetative state and minimally conscious state. Journal of the Neurological Sciences, 333, e710.CrossRefGoogle Scholar
  24. Pagani, M., Giovannetti, A. M., Covelli, V., Sattin, D., Raggi, A., & Leonardi, M. (2013) Physical and mental health, anxiety and depressive symptoms in caregivers of patients in vegetative state and minimally conscious state. Clinical Psychology and Psychotherapy. doi:10.1002/cpp.1848.
  25. Pagani, M., Leonardi, M., Covelli, V., Giovannetti, A. M., & Sattin, D. (2014). Risk factors for mortality in 600 patients in vegetative and minimally conscious states. Journal of Neurology. doi:10.1007/s00415-014-7309-8.
  26. Rossi Ferrario, S., Bacchetta, M., Omarini, G., & Zotti, A. M. (1998). Il Family Strain Questionnaire: Una proposta per il Caregiving assessment. Psicologia della Salute, 2, 119–127.Google Scholar
  27. Royal College of Physicians. (2003). The vegetative state: guidance on diagnosis and management. A report of a working party of the Royal College of Physicians. Clinical Medicine, 3, 249–254.CrossRefGoogle Scholar
  28. Sattin, D., Pagani, M., Covelli, V., Giovannetti, A. M., & Leonardi, M. (2013). The Italian version of the Nociception Coma Scale. International Journal of Rehabilitation Research, 36, 182–186.PubMedCrossRefGoogle Scholar
  29. Tabachnick, B. G., & Fidell, L. S. (2007). Using multivariate statistics. Boston: Pearson Education Inc.Google Scholar
  30. Valença, M. P., de Menezes, T. A., Calado, A. A., & de Aguiar Cavalcanti, G. (2012). Burden and quality of life among caregivers of children and adolescents with meningomyelocele: Measuring the relationship to anxiety and depression. Spinal Cord, 50, 553–557.PubMedCrossRefGoogle Scholar
  31. Zampolini, M. (2003). GISCAR research about serious acquired brain lesions. Methodology and preliminary data. Giornale Italiano di Medicina e Riabilitazione, 17, 15–30.Google Scholar

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

Personalised recommendations