Need for Support Groups
|
|
|
|
|
Would you like information about support groups at diagnosis?
|
28
|
26 (87%)
|
1 (3%)
|
1 (3%)
|
Was support group information provided at diagnosis?
|
30
|
13 (43%)
|
13 (43%)
|
4 (13%)
|
Are you interested in being involved with support groups?
|
29
|
17 (57%)
|
10 (33%)
|
2 (7%)
|
Have you searched for support groups overseas?
|
30
|
11 (37%)
|
19 (63%)
|
0
|
Have you found a support group in Australia specific to your child’s rare disease?
|
29
|
13 (43%)
|
13 (43%)
|
3 (10%)
|
Access to information and research
|
|
|
|
|
Do you believe you have been provided with adequate information about your child’s disease?
|
30
|
23 (77%)
|
5 (17%)
|
2 (7%)
|
Have you been provided with adequate information about you and your child’s legal and social rights?
|
29
|
11 (37%)
|
12 (40%)
|
6 (20%)
|
Have you been provided with adequate information about financial assistance?
|
29
|
13 (43%)
|
13 (43%)
|
3 (10%)
|
Are you interested in being kept informed of current research and clinical trials related to your child’s disease?
|
30
|
27 (90%)
|
2 (7%)
|
1 (3%)
|
Are you interested in your child participating in relevant research studies? |
29 |
22 (73%) |
3 (10%) |
4 (13%) |