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Table 5 Reported needs for information about support groups, diseases and research

From: Australian families living with rare disease: experiences of diagnosis, health services use and needs for psychosocial support

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%)