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Received Oct 31, 2011; Accepted Dec 7, 2011
1. Introduction
Vegetative state (VS) and minimally conscious state (MCS) are possible outcomes after an acquired severe brain injury (ASBI), encompassing traumatic and nontraumatic brain injuries, clinically included in the group of disorders of consciousness (DOCs) [1]. Even though patients in VS are in a condition of wakefulness, they are unable to show any residual behavioural evidence of awareness of themselves and of the environment [2]. MCS is instead defined as a state in which daily or clinical observation can bring to notice some residual finalistic behavioural signs of awareness, including following basic orders, staring and eye tracking, or using objects functionally [3].
With regards to recent advance in emergency medicine and intensive care techniques, the number of patients surviving ASBI has been gradually increasing. Incidence and prevalence of these conditions range from 0.5 to 4/100.000 and from 0.6 to 10/100.000 inhabitants, respectively [4]. Even though precise epidemiological data upon children with VS or MCS are not available, a study about life expectancy of VS and MCS children emphasised that these conditions are long standing and showed that 63% to 81% of the patients survive at least 8 years. It was also demonstrated that acquired brain injury in childhood and greater motor responses are better predictor of survival than the severity of level of consciousness [5].
Caring for a relative with a chronic disease [6–9] and in particular providing care for a child with severe disability are recognized as a risk factor for decreased physical and psychological health, with effects in terms of well-being and burden of caregivers [10]. Burden is a complex construct encompassing physical, psychosocial, and financial dimensions which, in the frame of the present paper, are considered related to care-giving activities. In a public health perspective, caregivers necessitate emotional and financial support from public sectors [11], hence, burden impacts on the society and entails practical consequences on health management and welfare policy. Children with VS and MCS have different clinical profiles; however, they both require constant and prolonged assistance that leads families to essential life changes. As reported by Raina et al. [10], caregivers show a considerable variation in the adaptation to their role’s demands, depending both on child health state and parents’ intrapsychic...