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| Diagnosis |
| Where do I get the right diagnosis? |
| Where can I find help and who can I approach if I realize that my child remains unwell? |
| What does it do to my child and our family when the correct diagnosis is established? |
| Where can I get any specific information? |
| What is the long-term prognosis? Will my child die? |
| Overall care |
| What kind of therapy is available for my child and is there a cure? |
| Does my child need regular physiotherapy and is any specific physiotherapy required? |
| Does my child need psychological support and where would it be available? |
| Do we have to carry all the costs for medical and supportive therapy? Is there any support for travel costs? |
| Family-related |
| How often do we need to see a specialised center? How far do we have to drive to get to a center? Will I need to take off work for every appointment? |
| How can I talk to my child about the illness? |
| What impact does a chronic disease have to family life? Where can we go if we do not manage it? |
| What impact has the illness to the siblings? Will there be any support for them? |
| Harm |
| What side effects do the treatments have? |
| What implications does a chronic disease have for my child’s future life? |
| Will my child be able to live on his own and will my child be able to live on own responsibility? |
| Does the diagnosis limit my child in his career choice? |
| Can my child undergo a normal teenage life with sport, leisure, party, stress? |
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