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      Children in Vegetative State and Minimally Conscious State: Patients' Condition and Caregivers' Burden

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          Abstract

          Caring for children in vegetative state (VS) or minimally conscious state (MCS) challenges parents and impacts on their well-being. This study aims to evaluate caregivers' health condition, coping, anxiety and depression levels, and how these issues relate to children's disability. 35 children with VS and MCS were administered the disability rating scale (DRS) and 35 caregivers completed the Coping Orientations to Problem Experiences, Short Form-12, Beck Depression Inventory, and the Spielberger State-Trait Anxiety Inventory-Y. Children were mainly males (68.6%), hosted at domicile (77.1%), and diagnosed with VS (60%), with anoxic aetiology (45.7%). Caregivers were mainly mothers (85.7%), married (82.9%), and housewives (51.4%); 60% declared financial difficulties, and 82.9% provided full-time assistance. 57.2% reported depressive symptoms, poor mental health, and high level of state and trait anxiety. “Problem-oriented” ( P < 0.001) and “emotional-oriented” ( P < 0.001), were more adopted than “potentially dysfunctional” ones. DRS scores (mean = 22.0; SD = 1.9) did not significantly correlate to any psychological measure. Rehabilitative programs for children with SV and SMC should also provide interventions on surrounding systems: improving the network of psychological support and social assistance may decrease the burden of caregivers and, in turn, improve caring abilities and children quality of life.

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          Most cited references33

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          Brain function in coma, vegetative state, and related disorders.

          We review the nosological criteria and functional neuroanatomical basis for brain death, coma, vegetative state, minimally conscious state, and the locked-in state. Functional neuroimaging is providing new insights into cerebral activity in patients with severe brain damage. Measurements of cerebral metabolism and brain activations in response to sensory stimuli with PET, fMRI, and electrophysiological methods can provide information on the presence, degree, and location of any residual brain function. However, use of these techniques in people with severe brain damage is methodologically complex and needs careful quantitative analysis and interpretation. In addition, ethical frameworks to guide research in these patients must be further developed. At present, clinical examinations identify nosological distinctions needed for accurate diagnosis and prognosis. Neuroimaging techniques remain important tools for clinical research that will extend our understanding of the underlying mechanisms of these disorders.
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            Differences between caregivers and noncaregivers in psychological health and physical health: a meta-analysis.

            Providing care for a frail older adult has been described as a stressful experience that may erode psychological well-being and physical health of caregivers. In this meta-analysis, the authors integrated findings from 84 articles on differences between caregivers and noncaregivers in perceived stress, depression, general subjective well-being, physical health, and self-efficacy. The largest differences were found with regard to depression (g = .58), stress (g = .55), self-efficacy (g = .54), and general subjective well-being (g = -.40). Differences in the levels of physical health in favor of noncaregivers were statistically significant, but small (g = .18). However, larger differences were found between dementia caregivers and noncaregivers than between heterogeneous samples of caregivers and noncaregivers. Differences were also influenced by the quality of the study, relationship of caregiver to the care recipient, gender, and mean age of caregivers.
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              Disability rating scale for severe head trauma: coma to community.

              The objective of this study was to develop one instrument for assessing quantitatively the disability of severe head trauma patients so their rehabilitative progress could be followed from coma through different levels of awareness and functioning to their return to the community. This disability rating (DR) instrument was designed to be easily learned, quickly completed, valid, predictive of outcome and to have a high inter-rater reliability. The DR Scale consists of 8 items divided into 4 categories; 1. Arousal and awareness; 2. Cognitive ability to handle self-care functions; 3. Physical dependence upon others; 4. Psychosocial adaptability for work, housework, or school. Completed independently by several raters for more than 88 serious head injury patients, inter-rater correlations were highly significant. The admission DR was significantly related to clinical outcome at 1 year after injury and was significantly related to electrophysiologic measures of brain dysfunction as reflected in degree of abnormality of evoked brain potential patterns. The DR Scale is more sensitive than the Glasgow Outcome Scale in detecting and measuring clinical changes in individuals who have sustained severe head trauma. Also it can be used to help identify patients most likely to benefit from intensive rehabilitation care within a hospital setting. It provides a shorthand global description of a head injury patient's condition that facilitates understanding and communication.
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                Author and article information

                Journal
                ScientificWorldJournal
                ScientificWorldJournal
                TSWJ
                The Scientific World Journal
                The Scientific World Journal
                1537-744X
                2012
                1 February 2012
                : 2012
                : 232149
                Affiliations
                1Neurology, Public Health and Disability Unit, Scientific Directorate, Neurological Institute Carlo Besta IRCCS Foundation, 20133 Milan, Italy
                2IRCCS “E. Medea”, Association “La Nostra Famiglia”, Centre of Bosisio Parini, Via Don Luigi Monza 20, 23842 Bosisio Parini, Italy
                3IRCCS Ospedale Pediatrico Bambino Gesù, Via Torre di Palidoro, 00050 Passoscuro, Fiumicino, Rome, Italy
                4IRCCS “E. Medea”, Association “La Nostra Famiglia”, Centre of Ostuni, Via dei Colli 5-7, 72017 Ostuni, Italy
                5IRCCS “E. Medea”, Association “La Nostra Famiglia”, Centre of Conegliano-Pieve di Soligo, Via Monte Grappa 96, 31053 Treviso, Italy
                Author notes

                Academic Editors: J. Benito-Leon, B. Blits, and R. Perneczky

                Article
                10.1100/2012/232149
                3290454
                22454603
                b784d70d-372d-44b6-befb-1058d051f1a2
                Copyright © 2012 A. M. Giovannetti et al.

                This is an open access article distributed under the Creative Commons Attribution License, which permits unrestricted use, distribution, and reproduction in any medium, provided the original work is properly cited.

                History
                : 31 October 2011
                : 7 December 2011
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                Research Article

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