Table 1.
Socio-demographic characteristics of 22q11DS caregivers
| 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) |