Family Experiences of Vegetative and Minimally Conscious States

Experiences on the hospital ward after ICU

After intensive care patients were moved onto high dependency wards and then out into general wards. They sometimes stayed on general wards for many months until they were well enough to move to a rehabilitation centre or long term care setting.
 
Some families we interviewed felt there had been generally good care on hospital wards and had positive memories of individual staff members who they viewed as key allies in looking after their relative at this point. At the same time, families were often concerned about aspects of physical care and about insufficient rehabilitation.
Some people we interviewed talked at length about problems with this stage of their relative’s care – contrasting it negatively with care provided later in specialist care settings. They felt that their relative had been ‘ware-housed’ and neglected, and that their own needs for information as a family had been disregarded.
The lack of support for patients (and their families) in the hospital setting after the immediate emergency can be profoundly distressing. These early experiences could also set the scene for families’ future relations with the health service – the ‘battle for care’ often began here.

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