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

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...

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Main Authors: A. M. Giovannetti, M. Pagani, D. Sattin, V. Covelli, A. Raggi, S. Strazzer, E. Castelli, A. Trabacca, A. Martinuzzi, M. Leonardi
Format: Article
Language:English
Published: Wiley 2012-01-01
Series:The Scientific World Journal
Online Access:http://dx.doi.org/10.1100/2012/232149
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author A. M. Giovannetti
M. Pagani
D. Sattin
V. Covelli
A. Raggi
S. Strazzer
E. Castelli
A. Trabacca
A. Martinuzzi
M. Leonardi
author_facet A. M. Giovannetti
M. Pagani
D. Sattin
V. Covelli
A. Raggi
S. Strazzer
E. Castelli
A. Trabacca
A. Martinuzzi
M. Leonardi
author_sort A. M. Giovannetti
collection DOAJ
description 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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spelling doaj-art-591cd4e268fe4c61b306176a84391cf12025-02-03T01:23:29ZengWileyThe Scientific World Journal1537-744X2012-01-01201210.1100/2012/232149232149Children in Vegetative State and Minimally Conscious State: Patients’ Condition and Caregivers’ BurdenA. M. Giovannetti0M. Pagani1D. Sattin2V. Covelli3A. Raggi4S. Strazzer5E. Castelli6A. Trabacca7A. Martinuzzi8M. Leonardi9Neurology, Public Health and Disability Unit, Scientific Directorate, Neurological Institute Carlo Besta IRCCS Foundation, 20133 Milan, ItalyNeurology, Public Health and Disability Unit, Scientific Directorate, Neurological Institute Carlo Besta IRCCS Foundation, 20133 Milan, ItalyNeurology, Public Health and Disability Unit, Scientific Directorate, Neurological Institute Carlo Besta IRCCS Foundation, 20133 Milan, ItalyNeurology, Public Health and Disability Unit, Scientific Directorate, Neurological Institute Carlo Besta IRCCS Foundation, 20133 Milan, ItalyNeurology, Public Health and Disability Unit, Scientific Directorate, Neurological Institute Carlo Besta IRCCS Foundation, 20133 Milan, ItalyIRCCS “E. Medea”, Association “La Nostra Famiglia”, Centre of Bosisio Parini, Via Don Luigi Monza 20, 23842 Bosisio Parini, ItalyIRCCS Ospedale Pediatrico Bambino Gesù, Via Torre di Palidoro, 00050 Passoscuro, Fiumicino, Rome, ItalyIRCCS “E. Medea”, Association “La Nostra Famiglia”, Centre of Ostuni, Via dei Colli 5-7, 72017 Ostuni, ItalyIRCCS “E. Medea”, Association “La Nostra Famiglia”, Centre of Conegliano-Pieve di Soligo, Via Monte Grappa 96, 31053 Treviso, ItalyNeurology, Public Health and Disability Unit, Scientific Directorate, Neurological Institute Carlo Besta IRCCS Foundation, 20133 Milan, ItalyCaring 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.http://dx.doi.org/10.1100/2012/232149
spellingShingle A. M. Giovannetti
M. Pagani
D. Sattin
V. Covelli
A. Raggi
S. Strazzer
E. Castelli
A. Trabacca
A. Martinuzzi
M. Leonardi
Children in Vegetative State and Minimally Conscious State: Patients’ Condition and Caregivers’ Burden
The Scientific World Journal
title Children in Vegetative State and Minimally Conscious State: Patients’ Condition and Caregivers’ Burden
title_full Children in Vegetative State and Minimally Conscious State: Patients’ Condition and Caregivers’ Burden
title_fullStr Children in Vegetative State and Minimally Conscious State: Patients’ Condition and Caregivers’ Burden
title_full_unstemmed Children in Vegetative State and Minimally Conscious State: Patients’ Condition and Caregivers’ Burden
title_short Children in Vegetative State and Minimally Conscious State: Patients’ Condition and Caregivers’ Burden
title_sort children in vegetative state and minimally conscious state patients condition and caregivers burden
url http://dx.doi.org/10.1100/2012/232149
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