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
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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.
KeywordsInformal caregivers Vegetative state Minimally conscious state Burden Needs Depression Anxiety
- 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
- 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
- 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
- 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
- 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
- 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.
- 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.
- 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
- Tabachnick, B. G., & Fidell, L. S. (2007). Using multivariate statistics. Boston: Pearson Education Inc.Google Scholar
- 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