Table 3 22q11DS caregivers perception of healthcare services
From: Parental experiences and needs of caring for a child with 22q11.2 deletion syndrome
How do you rate the healthcare services for 22q11DS children | Very bad | Rather bad | I do not know | Rather good | Very good |
|---|---|---|---|---|---|
Support for caregivers from government and social institutions | 10(22.7) | 17(38.6) | 5(11.4) | 10(22.7) | 2(4.5) |
Quality of medical care for your 22q11DS child | 1(2.3) | 14(31.8) | 7(15.9) | 20(45.4) | 2(4.5) |
Access to specialists (neurologist, geneticist, genetic clinic, psychologist | 9(20.5) | 20(45.4) | 2(4.5) | 12(27.3) | 1(2.3) |
Access to medications for 22q11DS children | 19(43.2) | 15(34.1) | 7(15.9) | 2(4.5) | 1(2.3) |
Access to and financial help with rehabilitation for 22q11DS children | 2(4.5) | 7(15.9) | 11(25) | 14(31.8) | 10(22.7) |
Access to information on 22q11DS | 14(31.8) | 16(36.4) | 3(6.8) | 9(20.5) | 2(4.5) |
Support for 22q11DS children and caregivers from healthcare professionals | 9(20.5) | 16(36.4) | 8(18.2) | 10(22.7) | 1(2.3) |
Physicians’ knowledge about 22q11DS | 17(38.6) | 19(43.2) | 2(4.5) | 6(13.6) | 0(0) |
Physicians’ practical information about 22q11DS(how to provide care for your 22q11DS child; how to perform various tasks) | 14(31.8) | 14(31.8) | 11(25) | 5(11.4) | 0(0) |
Physician’s/neurologist’s/geneticist’s communication skills | 5(11.4) | 13(29.5) | 4(9.1) | 21(47.7) | 1(2.3) |
Support caregivers receive from physicians | 9(20.5) | 13(29.5) | 12(27.3) | 9(20.5) | 1(2.3) |
Physicians’ empathy | 5(11.4) | 12(27.3) | 7(15.9) | 18(40.9) | 2(4.5) |
Drug and healthcare expenses | 7(15.9) | 5(11.4) | 15(34.1) | 7(15.9) | 10(22.7) |
Adaption of home to the child’s needs | 21(47.7) | 12(27.3) | 5(11.4) | 2(4.5) | 4(9.1) |
Lack of access specialised care equipment | 16(36.4) | 13(29.5) | 10(22.7) | 3(6.8) | 2(4.5) |
Drug reimbursement or purchase of drugs | 16(36.4) | 13(29.5) | 9(20.5) | 2(4.5) | 4(9.1) |
Contact with genetic clinic | 3(6.8) | 6(13.6) | 10(22.7) | 24(54.5) | 1(2.3) |
Contact with psychological clinic | 3(6.8) | 8(18.2) | 16(36.4) | 14(31.8) | 3(6.8) |
Contacts with the healthcare system | 1(2.3) | 3(6.8) | 21(47.7) | 10(22.7) | 9(20.5) |