Table 5 Social support for 22q11DS caregivers
From: Parental experiences and needs of caring for a child with 22q11.2 deletion syndrome
Never | Rarely | Sometimes | Often | Always | |
|---|---|---|---|---|---|
While caring for my 22q11DS child | |||||
I can count on emotional support from my family | 2(4.5) | 6(13.6) | 13(29.6) | 10(22.7) | 13(29.6) |
I can count on emotional support from relatives/friends | 9(20.5) | 11(25) | 14(31.8) | 8(18.2) | 2(4.5) |
I can count on practical help from my relatives/friends (i.e. shopping, cleaning) | 12(27.3) | 6(13.6) | 9(20.5) | 10(22.7) | 7(15.9) |
I have a feeling that my family isolates itself from us | 18(40.9) | 9(20.5) | 11(25) | 4(9.1) | 2(4.5) |
I experience conflicts in my family | 18(40.9) | 8(18.2) | 11(25) | 6(13.6) | 1(2.3) |
Source of support for 22q11DS children and caregivers | |||||
family | 2(4.5) | 5(11.4) | 8(18.2) | 9(20.5) | 20(45.4) |
relatives/friends | 12(27.3) | 14(31.8) | 8(18.2) | 9(20.5) | 1(2.3) |
associations/foundations for people with 22q11DS | 16(36.4) | 9(20.5) | 10(22.7) | 6(13.6) | 3(6.8) |
psychologist | 25(56.8) | 8(18.2) | 4(9.1) | 4(9.1) | 3(6.8) |
local support group | 30(68.2) | 6(13.6) | 4(9.1) | 3(6.8) | 1(2.3) |
Internet/Facebook support group | 5(11.4) | 4(9.1) | 20(45.4) | 11(25) | 4(9.1) |
neighbours | 33(75) | 4(9.1) | 6(13.6) | 1(2.3) | 0(0) |
physician | 10(22.7) | 9(20.5) | 17(38.6) | 6(13.6) | 2(4.5) |
other medical personnel | 23(52.3) | 12(27.3) | 4(9.1) | 4(9.1) | 1(2.3) |
clergyman | 31(70.5) | 6(13.6) | 3(6.8) | 4(9.1) | 0(0) |
other person | 25(56.8) | 7(15.9) | 7(15.9) | 5(11.4) | 0(0) |
religion/spirituality | 20(45.4) | 5(11.4) | 8(18.2) | 8(18.2) | 3(6.8) |
leisure activity/hobby | 9(20.5) | 12(27.3) | 18(40.9) | 2(4.5) | 3(6.8) |