Table 5 Reported needs for information about support groups, diseases and research
Question | Number of responses | Yes | No | Don’t Know |
|---|---|---|---|---|
N (%) | N (%) | N(%) | ||
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%) |