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Oxford University Hospitals NHS Foundation Trust
OxPARC

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Common feelings and emotions

At diagnosis

Hearing that your son or daughter has JIA or another rheumatological condition is likely to come as a shock. It often provokes a mixture of emotions including relief at having a diagnosis but also worry about a long-term condition that may cause harm.

Parents often wonder whether they could have done more to prevent the problem or act sooner. The answer is no.

You'll also probably have a multitude of questions. You may feel confused, or feel that you have not remembered all that is said in clinic.

Don't worry. There is plenty of time and a team of people on hand to help. Remember, you can always contact us.

And later on…

With time you will develop an understanding of the conditionand how it affects your child, you and the family. However, there may still be ups and downs.

These difficulties usually turn out to be minor, although they can shake confidence. Talking with our nurse specialist or other team members often helps to put things into perspective.

Accepting and administering long-term medication is a common challenge for children and their parents. Many parents are concerned about the long-term implications of medications. We will be happy to discuss this with you.

Despite medication, flares of your child's JIA may still occur. This can feel like a set-back but more settle with some intervention e.g. changes in medication may sometimes be required. We will explain the options available and decide with you about any changes needed.

Mum

Often clinic appointments and blood tests become the mum’s responsibility. You may find it useful to bring someone with you if you can (partner, husband or family member) to support you during appointments. If there are ways we can help please let us know.

Parents of teenagers may encounter different challenges including allowing your son/daughter to become more independent and manage their condition and medication. We can offer help and support during this time.

Dad

Often it is dads who have work commitments that may make it difficult to attend their child’s appointments but you will still have questions of your own and will need to understand what is going on.

Where possible it is advisable to rearrange work commitments to make it to some appointments. Hearing things first-hand can make understanding easier and make you feel more involved.

If you can't make it to an appointment, talk through any questions you have with your partner or (if appropriate) your child and ask them to take these to the appointment.

It is also important to catch up with what happened at an appointment. Clinic letters will summarise and help to clarify things. In addition you can contact us by phone or email to discuss further.

Siblings and rivalry

Getting the balance right with brothers and sisters can be difficult, but being aware that this can be a problem is a good place to start.

When a child is unwell, it is natural that they will take more of their parents’ time and attention. You can try to minimise any sibling rivalry that this may cause by:

  • Making sure you have one to one time with all your children
  • Involving and informing siblings at every stage.
  • Bringing siblings to appointments if possible and appropriate. (You can request appointments during the school holidays if this helps).