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Table 1 Demographic details of parents with a child with a rare disease

From: The supportive care needs of parents with a child with a rare disease: results of an online survey

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