| 5.1 | Physical comfort | |
| “He’s happy because he’s no longer in pain from his oesophagitis and he’s freer to spend more time looking at the world around him and | Mother |
| participating.” | |
| 5.2 | Nutritional status | |
| a | “I knew she was underweight but she seemed fine, but when I look back at photos I think ‘Oh my God, she was just like a stick insect’.” | Mother |
| b | “She’s probably a bit under what they’d like her to be but then I think we have to lift her, so in some ways I am quite happy with | Mother |
| that for the time being.” | |
| 5.3 | Other | |
| “She falls asleep at school and she finds the more tired she gets she just stops everything … So we’re fighting fatigue and she will actually | Mother |
| give up eating from fatigue before she’s actually full.” | |