Table 1 Details of (a) focus group participants, N = 23, (b) pre-focus group survey responses N = 20 and (c) post-focus group survey responses N = 13
(a) Focus groups | Number of participants (%) |
|---|---|
Adults with a MRCD | 14/20 (70%) |
Parents of a child with a MRCD | 9/20 (45%) |
Participants with both | 3/20 (15%) |
Participants from metro regions | 15/20 (75%) |
(b) Pre-focus group survey | Number of responses, where N = 20 (%) |
|---|---|
Length of time engaging with the health system around their/their child’s MRCD | M = 9.8 years (range 1–50 years) |
Diagnosed over three years ago | 14 (70%) |
Participants who see a MRCD service with a multidisciplinary team | 9 (45%) |
(c) Post-focus group survey | Number of responses, where N = 13 (%) |
|---|---|
Participants who answered “Extremely useful” or “Very useful” to How useful do you think the new guidelines are? | 11/13 (85%) |
Participants who responded “yes” to “Are the guidelines relevant to your situation?” | 11/12 (92%) |