Thank you for taking part of our survey.  We are trying to improve services for children and families that are affected by JIA.  This information will help us build a case for funders to support the care you need.  You only need to answer the questions you feel comfortable answering.  With the exception of the one question that you may wish to put contact information in about one topic only, we will not contact you in regards to this survey.  You may, however, contact us at anytime regarding this survey at info@arthritisact.org.au.  

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* 1. How long ago was your child diagnosed

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* 2. Thinking back to when you first noticed symptoms in your child, how long did it take to get a diagnosis

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* 3. Where did you get the first indication of your child's diagnosis?

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* 4. Who does your child receive their arthritis medical care from now?

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* 5. Do you have access to other support to assist your child?

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* 6. As a parent, what have you found the most supportive in your journey as a parent of a child with JIA?

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* 7. Would you be happy to have your child have input into this survey?

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* 8. If your child is happy to provide their input, could they please tell us where they find they get the most help, or in other words, where they feel the happiest about understanding their condition and dealing with their condition.  (Skip this question if your child does not want to have input)

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* 9. Have you/your child been on a JIA camp in the past?

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* 10. Arthritis Australia has just received funding to assist children who have not been on a JIA camp before to attend a camp.  If this is you, would you and/or your child be interested in attending a camp?

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* 11. JIA camps in the future are planned to be held in WA (Perth Region), NSW (Sydney region) and the ACT Region (possibly the Snowy Mountains area or the South Coast of NSW).  Travel assistance may be available for people from outside these regions.  Please answer only if you have not been on a camp before.  This information will help us plan the possible costs of providing support to assist children and families who have not been able to attend a camp in the past.  If you are interested in attending a camp in the future, which one/s would be of more interest to you?

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* 12. If you have been on a camp before which one have you been on?

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* 13. If you have been on a camp before, would you be interested in going on a camp again

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* 14. If you are interested in going on a camp again, which one would be your preference?

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* 15. If you have indicated you would be interested in attending a camp could you indicate your home location (town, state/territory) and an email address if you would like us to follow up with you as camps become available.  It doesn't matter if you have been on a camp before or not.  This is the only reason we will contact you as a result of this survey.

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* 16. Back to your child's treatment.  Does your child self administer their arthritis drugs?

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* 17. If your child does self administer their arthritis drugs, who taught them?

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* 18. What age were they when they started taking their own drugs?

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* 19. When they started taking their own drugs, did they want to or did they need to be 'gently nudged'? Mark all that apply.

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* 20. Does your child receive infusions?

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* 21. If your child receives infusions, where do they have them?

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* 22. If your child receives infusions, is it in the same locality as they receive their rheumatological care ie they receive their infusions at Westmead and see their rheumatologist at Westmead.

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* 23. If they don't receive their infusions at the same place as they see their rheumatologist, does the location where they receive their infusion have any specific rhuematology support such as a rheumatology nurse available for you and your child when your child is having their infusion?

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* 24. Is your child on oral medications?

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* 25. If your child is on oral medications, do they take them independently (that is they know when to take them and generally do not need to be reminded to take them)

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* 26. Does your child initiate taking their own pain medication when they have breakthrough pain (that is pain that is not controlled with their regular medications)

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* 27. If you child takes their own medications, do you think they would have started taking them without some of the supports we have asked you about in this survey (JIA nurse, learning at camp, etc)

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* 28. Do you think you would have been able to teach your child to take their medications on their own without any outside support?

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* 29. As a parent, what has been the most helpful support you have had in your journey as a parent of a child with JIA?

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* 30. If your child is happy to tell us, what has been the most helpful support outside of your parents to help you deal with your JIA?

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* 31. Do you have other children who are not affected by JIA?

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* 32. Do you have other children affected by other conditions?

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* 33. Have your non-JIA children affected by other conditions ever needed access to some support to cope with their feelings or to manage symptoms of their condition?

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* 34. If your non-JIA child/ren have needed support to cope with their feelings or symptoms, have they been able to get this support, and if so, where?

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* 35. If you have been able to to get support for your non-JIA affected children, what has been the best in your non-JIA affected child's opinion?

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* 36. Have you tried to access the NDIS to gain support for your JIA child?

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* 37. Do you think NDIS funding would enable your child to access supports like physiotherapy, hydrotherapy, and so forth?

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* 38. Do financial considerations inhibit you from being able to access allied health support eg physio, hydrotherapy

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* 39. Do you have support through a Centrelink carers payment?

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* 40. Does your child's school understand what JIA is and the need for extra sick days or modifications to programs?

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* 41. Does your child receive extra support through the school/education system

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* 42. How old is your JIA child?

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* 43. What state/territory do you live in?

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* 44. What is your child's primary diagnosis ie JIA, Hypermobility syndrome, etc

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