Table 1.
Demographic details of parents with a child with a rare disease
| Parent characteristics | n | % |
|---|---|---|
| Gender | ||
| Mother | 275 | 91.4 |
| Father | 26 | 8.6 |
| Total | 301 | 100.0 |
| Number of children with a rare disease | ||
| 1 | 259 | 86.0 |
| 2 | 36 | 12.0 |
| 3 or more | 6 | 2.0 |
| Total | 301 | 100.0 |
| Parent status of disease | ||
| Diagnosed as a carrier/ full disease | 85 | 28.2 |
| Suspected carrier/ full disease | 21 | 7.0 |
| No carrier/disease | 195 | 64.8 |
| Total | 301 | 100.0 |
| Age | ||
| 15–24 | 8 | 2.7 |
| 25–34 | 84 | 27.9 |
| 35–44 | 131 | 43.5 |
| 45–54 | 66 | 21.9 |
| 55+ | 12 | 4.0 |
| Total | 301 | 100.0 |
| Country and region of residence | ||
| Australia (total) | 285 | 100.0 |
| Metropolitan/ City | 190 | 66.7 |
| Rural/ Country area | 95 | 33.3 |
| New Zealand (total) | 16 | 100.0 |
| Metropolitan/ City | 10 | 62.5 |
| Rural/ Country area | 6 | 37.5 |
| Total | 301 | 100.0 |
| Marital status | ||
| Single/ Never married | 5 | 1.7 |
| Married/ Defacto | 258 | 85.7 |
| Widowed | 7 | 2.3 |
| Separated/ Divorced | 31 | 10.3 |
| Total | 301 | 100.0 |
| Respondent’s employment status | ||
| Of parent | ||
| Full-time wage earner | 52 | 18.5 |
| Part-time wage earner | 101 | 36.1 |
| Non-wage earner | 127 | 45.4 |
| Total | 274 | 100.0 |
| Partner’s employment status | ||
| Full-time wage earner | 184 | 79.6 |
| Part-time wage earner | 24 | 10.4 |
| Non-wage earner | 23 | 10.0 |
| Total | 231 | 100.0 |