Table 4 Feelings toward caregiving
From: Parental experiences and needs of caring for a child with 22q11.2 deletion syndrome
Never | Rarely | Sometimes | Often | Always | |
|---|---|---|---|---|---|
How did your child’s disease affected your relationship with your family? | 2(4.5) | 4(9.1) | 11(25) | 20(45.5) | 6(13.6) |
How did your child’s disease affected your relationship with a healthy child/children? | 2(4.5) | 13(29.5) | 5(11.4) | 11(25) | 10(22.7) |
Do you worry that your other (or future) children can also develop 22q11DS? | 16(36.4) | 7(15.9) | 6(13.6) | 5(11.4) | 10(22.7) |
Do you worry over family finances? | 1(2.3) | 8(18.2) | 10(22.7) | 12(27.3) | 13(29.5) |
Do you feel uncomfortable when other people are in the presence of your 22q11DS child? | 16(36.4) | 10(22.7) | 10(22.7) | 8(18.2) | 0(0) |
Do you worry over the progress of your child’s disease and the development of new symptoms? | 0(0) | 2(4.5) | 6(13.6) | 17(38.6) | 19(43.2) |
Are you bothered by the thoughts on your child’s death? | 6(13.6) | 13(29.5) | 11(25) | 9(20.5) | 5(11.4) |
Have you ever faced stigmatisation resulting from your child’s disease? | 20(45.4) | 12(27.3) | 9(20.5) | 3(6.8) | 0(0) |
Have you ever experienced discrimination resulting from your child’s disease? | 19(43.2) | 13(29.5) | 8(18.2) | 4(9.1) | 0(0) |
Is child’s disease a source of social exclusion? | 22(50) | 7(15.9) | 8(18.2) | 7(15.9) | 0(0) |
Is caregiving a source of satisfaction? | 7(15.9) | 8(18.2) | 11(25) | 12(27.3) | 6(13.6) |
Are you happy? | 3(6.8) | 5(11.4) | 6(13.6) | 24(54.5) | 6(13.6) |
How often do you rate your quality of life (QoL) highly? | 1(2.3) | 9(20.5) | 6(13.6) | 28(63.6) | 0(0) |