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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