| a | Parent–child interaction | “We were told virtually, ‘put him in a home, they’ll look after | “Basically a lot of these families just become imprisoned by |
| | him, don’t worry about it’… and I thought you can put him | their child’s disabilities, so they’re like slaves to their kids” |
| | in a home and yes, they can look after him, but they can’t | |
| | love him and I think the love makes the big difference.” | |
| b | Delivery of services | “We were never given choices … We saw the surgeon and the | “I wonder whether part of the conflict might also be an element |
| | next day he had (the gastrostomy) done. And I mean he was | of control, like do the parents ultimately want to have the control |
| | 9 months old, our first child. We were still getting over the | or are they happy to relinquish that control in a way, for those |
| | fact that he’d got cerebral palsy. Maybe we were stupid. We | major decisions to other informed people which are probably |
| | just followed what the doctor said.” | mainly the medical fraternity.” |
| c | Emotional well-being | “Like, if your child wasn’t crying you wouldn’t think they were | Health professional describing the difficulty of assessing a |
| | having a great life, you’d still want them to achieve and to do | patient’s “happiness”: “when you’ve got someone who’s got |
| | stuff … our kids want to live life just as much as anyone else. | really severe physical disabilities you also have to key into |
| | And even if it’s a shorter life span it’s to be a happy life span.” | things like breathing patterns and just tenseness or relaxation, |
| | | relaxing of muscles, looking at that posture, they’re very |
| | | subtle things.” |
| d | Physical well-being | “He’s putting on weight. I mean that’s not everything. | “They (parents) often say they don’t want them to put on too |
| | Having a life is pretty important too.” | much weight because then it will be difficult for them to lift.” |
| e | Socialisation | “(the teachers) support the children so they can all watch | “…in a social situation, trying to bring normality to the |
| | each other feed and so that they know that each other also | family if they go to a restaurant. There’s a great deal of |
| | has a button and I find that really has been a good thing for | embarrassment associated with meals … and you often get looks |
| | (my son), to accept that he’s not the only one.” | of disgust when the child retches or vomits in a restaurant.” |