Table 7.

Descriptions of care

Care from family

When i t's time for bed I have to hoist him… out of his chair into bed, get him all comfy and stuff like that, put his bed up… then make sure the water is fresh in the [humidifier], so I just go empty that out and use boiled water from the kettle, put that on and i t's just a case of switching the [ventilator] on… I have to put the [nasal pillows] over [Ror y's ] head and it takes a good while for me to get it in the right position because h e'l l say i t's too far that way, ther e's air escaping… but once he gets it right h e's like tha t's fine and he will just go off to sleep (Clare)

Care from paid social care workers

Two hours in the morning, an hour in the afternoon and an hour sort of tuck in evening… They bring the ventilator through during the day if I need it, make sure that i t's all set up, that the water in the humidifier is topped up… help me feed if I need to… getting dressed, shower, getting up, on and off of the toilet (Fergus)