Table 1 Socio-demographic characteristics of 22q11DS caregivers
From: Parental experiences and needs of caring for a child with 22q11.2 deletion syndrome
Characteristics | N (%) |
|---|---|
Caregiver’s sex | |
female | 43(97.7) |
male | 1(2.3) |
Caregiver’s age | |
Range | 25–53 |
M(SD) | 37.3(6.4) |
How many of your children experience 22q11DS? | |
1 | 43(97.7) |
2 or more | 1(2.3) |
Child’s sex | |
female | 21(46.7) |
male | 24(53.3) |
Child’s age M(SD) | |
Range | 1–17 |
M(SD) | 7.3(4.8) |
How would you rate your child’s health problems | |
very severe | 21(47.7) |
severe | 9(20.5) |
moderate | 10(22.7) |
mild | 4(9.1) |
none | 0(0) |
How many hours per week do you use extracurricular help for your 22q11DS child? | |
1–6 | 7(15.9) |
7–15 | 6(13.7) |
<16 | 2(4.5) |
I do not use any extra help | 29(65.9) |
Do you receive care allowance? | |
yes | 32(72.7) |
no | 12(27.3) |
Professional activity | |
unemployed | 0(0) |
unemployed due to childcare | 22(50) |
pension | 2(4.5) |
employed part-time | 5(11.4) |
employed full-time | 15(34.1) |
Has your child’s disease affected a disorganisation of the relationship with the second parent? | |
the child’s disease has not harmed the relationship | 32(72.7) |
the child’s disease has harmed the relationship with the partner but has not lead to its breakup | 9(20.5) |
the child’s disease has strengthened the relationship | 0(0) |
the relationship broke up after the diagnosis was made | 0(0) |
the relationship broke up as a result of challenges related to caring for 22q11DS child | 1(2.3) |
other | 2(4.5) |
Are you a member of a support group for persons caring over 22q11DS person? | |
yes | 41(93.2) |
no | 3(6.8) |